Autistic Speaks

Dear Blogger (and you, too)

2011-05-27T20:47:00.002-04:00

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.

Six of one...

2011-05-26T09:36:00.003-04:00

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.

Some things to know about talking to someone who types

2011-05-24T18:06:00.003-04:00

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.

New rule in town

2011-05-23T21:09:00.002-04:00

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.

Call me Lydia

2011-05-22T16:06:00.005-04:00

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!

Let's get one thing straight

2011-05-20T21:58:00.003-04:00

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.

Little clues

2011-05-19T17:40:00.011-04:00

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)

Me too

2011-05-18T21:51:00.002-04:00

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.

But I haaaave to

2011-05-16T22:45:00.003-04:00

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!

2011-05-16T20:24:00.001-04:00

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

2011-05-16T10:29:00.003-04:00

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...

Sounds like a blog post

2011-05-15T10:41:00.003-04:00

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.

A whole new world

2011-05-13T17:12:00.003-04:00

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.

I'm in a poetry mood

2011-05-11T19:21:00.000-04:00

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.

Why the dichotomy?

2011-05-10T21:17:00.003-04:00

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.

On empathy

2011-05-09T11:21:00.003-04:00

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.

Defies expectation? You tell me

2011-05-07T22:12:00.003-04:00

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).

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.

Think Outside the Box!

2011-05-05T17:31:00.002-04:00

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.

Talk of a cure

2011-05-04T19:17:00.003-04:00

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.

Please, spread the word

2011-04-30T23:40:00.002-04:00

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.

Echopalooza

2011-04-29T18:06:00.003-04:00

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!

#Me1Panicattacks0

2011-04-28T22:21:00.006-04:00

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.

Speechless

2011-04-27T20:56:00.002-04:00

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?!

Come join me!

2011-04-26T15:42:00.001-04:00

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!

A bunny who is funny

2011-04-24T19:28:00.003-04:00

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.

Sparkly shoes and kitty cats

2011-04-22T20:13:00.003-04:00

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...

In good company

2011-04-20T13:40:00.003-04:00

On second thought, check this out!

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

Seeing the world through blue colored glasses

2011-04-19T16:05:00.004-04:00

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

2011-04-19T11:09:00.001-04:00

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!

Do you hear me?

2011-04-18T17:31:00.003-04:00

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.

Things I'm known for

2011-04-16T20:21:00.003-04:00

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.

In the meantime, check this out

2011-04-14T09:41:00.006-04:00

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.

Dignity

2011-04-11T10:28:00.002-04:00

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.

Why today was good

2011-04-09T20:48:00.003-04:00

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!

Done.

2011-04-08T09:27:00.004-04:00

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.

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

2011-04-06T20:12:00.004-04:00

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!

One more April 2nd post for you

2011-04-04T10:21:00.003-04:00

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.

Show me your blue!

2011-04-03T16:22:00.010-04:00

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.

Why I wear blue

2011-04-01T15:14:00.006-04:00

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!

Living in your sweet spot

2011-03-30T12:15:00.003-04:00

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?

The biggest decision I've ever made

2011-03-27T14:06:00.005-04:00

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.

Elsie mini photo shoot

2011-03-26T10:58:00.006-04:00

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.

Dear Autism

2011-03-25T15:53:00.004-04:00

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

Grammar lessons

2011-03-23T09:21:00.002-04:00

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 ;)

Elsie update

2011-03-22T09:27:00.003-04:00

A post is swimming in my mind; it's in the hazy, nebulous beginnings of what it will soon become (at least, I hope it will). Soon, I hope that I will start getting phrases and bits and pieces of what it will say. Right now, it's just an idea. But, when it comes together, you'll know.

I just wanted to tell you (because so many of you have expressed care and concern, and we appreciate that very much) that Elsie is doing really, really well. She's on a normal eating schedule as of this morning, hasn't thrown up since Friday night, and is back to her little twerpy things that she does. The things that drove me nuts (typing on the keyboard, crying while I'm in the shower until I get out, begging to go into the storage closet so she can chew on the Christmas tree), I'm suddenly seeing in a new light and finding cute and funny.

Thank you, thank you to all of you who have told me what a good cat mom I am. That is truly the highest compliment anyone could give me. Elsie means so very much to me, and I strive to care for her as well as can be done. If you'll allow me to digress a tad, I will say that when I compliment other people, I compliment them on their cats. "Your cat is pretty" is one of the best compliments I can think of. Leigh recently told me that, well, not everyone sees that as a compliment. Try complimenting people on their clothes or their personality traits that I admire. So, I'm trying, but it all sounds a bit silly to me. I don't want to be complimented on those things; I want someone to tell me something good about my cat. So, to tell me that I am a good cat mom is the highest praise.

Not out of the woods yet

2011-03-19T16:23:00.002-04:00

A new day dawned at 4AM this morning... before the sun was even out. Elsie had woken me up at 12, 2, and then 4 for milk. As of 4, even after I fed her, she wanted me up and moving, and I was kind of up anyway, so... up I got.

It was a long, long morning. I was desperately awaitng 9:30 when I could call the city's cat clinic with the cat specialist and see if they could see her. I did everything I could think of to entertain myself and talked to Els a lot.

9:30 came and the line was busy. At 9:34, I got through. The woman who picked up the phone said that Elsie needed to go to the city's best animal hospital ER, because she needed fluids and tests. It would run over a thousand dollars, and they don't do payment plans. But, it was our only option.

My mom and I had "the talk," in which she told me that euthanasia was possibly on the table, and while obviously I wasn't happy, I also knew that it's not time; not yet. My mom said to let her think and that when she got to my house, we'd talk.

My mom came over around 11. She remembered from when my aunt's friend's cat was old and sick the name of a doctor (Dr. Tarter), a deeply Southern guy who works at Petsmart at the Banfield Animal Hospital. My aunt's friend liked him because he cared well for the cats but worked within financial constraints, and if something was too expensive, did not try to guilt you into doing it (like our current vet does). I called, and they said to bring her right over, that they had an appointment at noon.

Elsie hates car rides, and she was mighty restless the whole time. We got her to the clinic and filled out paperwork. They called her back and noted that she was dehydrated and had lost weight. The doctor came in and talked to her and pet her for a bit before he tried to pull her out of her carrier. Every time someone pulled her out, she tried to run back in, which she never does... she really must be feeling sick.

Basically, the doctor said that there's no way to know if it's truly IBD without extensive testing (which I cannot afford). Even then, he needs her records to tell if her history is consistent with IBD. He said that IBD is often manageable without steroids (which she's been on for over a year on varying doses), and that when she gets through this flare, depending on her records, he might see about daily Pepto Bismal (yep, the pink stuff) instead.

He said that if she'll drink cat milk, that for the short term, give her that. I also bought a super, super high calorie paste (as in, 2-4 teaspoons provides a day's worth of calories) to mix into the milk, and she's taking sips of it. He prescribed a special, easily digestable, high calorie cat food only available by prescription. Cats love it and digest it well, so it should be good.

He gave her Pepto, an injection so that she won't vomit for 24 hours, and fluids in the back of her neck. She has a bubble now. We bought Pepto to give her at home, too.

We came home, prepared some calorie paste/cat milk, and went to run errands. I finally got a break because she had the fluids, so I didn't need to give them to her every hour. When I got home a bit ago, she was miserable and wobbly and just plain weird. Then, I realized about that nausea shot they gave her- that's what happens to me when I get a shot for vomiting! I called the clinic and they said it can definitely do that, and they'll call back tomorrow and if she's not better I can bring her in.

So, we're still counting tiny cat-sized sips of nutrition/fluid instead of ounces like I wish we would be, but he says that she should pull through. We brought her in before she got critical, which was definitely good.

Keep praying? We need it. Pray that I know what to feed her when, that I don't get exhausted, that her poor little belly heals. Pray that she's not in pain. Pray that I have self control, because if I get excited and feed her too much too quickly, she'll start throwing up again. Gotta go slow.

One step at a time.

The cat who won't stop giving

2011-03-18T21:15:00.003-04:00

So, Elsie's really flaring. For those who have not followed this saga, Elsie Penelope is my 13-year-old cat who was diagnosed with inflammatory bowel disease a few years ago. The vet informed my mom and I that basically, she would flare periodically, and each time it would be worse until one time she would starve. So. Not much to look foward to.

I thought it was it two flares ago. She stopped eating and drinking for 3 days. We took her to the ER, and they gave her Pepcid and fluids and sent her home. The vet switched her from prednisone injections to oral steroid medication. We also switched her to super-high-quality, organic, chicken-free, gluten-free, corn-free food (it's made of green pea and duck, in case you wonder what's left to feed a cat). She got better.

I really thought the last time was it (October 2010). She began to throw up everything she ate. Everything. At some point, testing different foods, I found out that dry food caused her to throw up, while her wet food did not. Easy (though expensive) switch. Also, we temporarily increased her prednisone from 0.3 mL/every other day to 0.5 mL/day. Again, she got better.

Until Thursday. I came home to what looked a human had done in terms of vomiting. Well, quantity, anyway. There were about 50 separate little puddles, ALL over my living room carpet. Clean up? Oh, so over that. No big deal. In fact, I left the throw up, tip-toed around it, and held my kitty. She threw up again Friday, though not as much. I didn't feed her this morning, and she still threw up. She also has diarrhea, and she is hardly drinking. Oh, and she keeps getting vomit on herself and is too exhausted to get it off, and I don't have the heart to put her through a wet rag, so icky she will be. I love her and kiss her anyway.

Basically, at this point, all the stops are pulled out. Back up on the prednisone. Giving her Pepcid AC at home (not an easy cat to pill). Got some CatSip (unfortified milk with lactase added so that cats can digest it). Feeding her this every hour and will continue to do that all night, all day, until she can eat again. Tomorrow, we will get the dollar-an-once CatSure, a milkshake designed for older cats who can't or won't eat. All I can say is, at that price, let's just hope and pray that it's successful. The CatSip is good for being something, anything she can take in, but it's not fortified and is therefore not meant as a long-term supplement.

Miss Never-Leaves-My-Side; Miss I'll Just Sit Here and Stare At You, Mom; Miss Squeak... is hiding under the doll cradle. She's lost over a pound in 2 days. I'm so thankful for the purposeful extra half-pound I put on her in the past month or two in preparation for the next time this happened. I will take a barely-chubby cat most of the time rather than a deathly thin one occasionally.

But even in all of this, she never stops. Never. The other night, I was having a major melt down, and when I called my mom, she told me to get a shower. I resisted but finally complied. However, I continued to bawl my eyes out in the shower. Elsie came into the bathroom (she usually waits and meows some while I'm in the shower) and began to cry, cry, cry. When I opened the curtain, she quite literally tried to climb into the shower with me, she was so concerned. I used a wet hand to guide her back out. You know how cats are with water, right? Elsie's no different... unless her mama is upset, apparently.

Since I've started writing this she's thrown up another 4 or 5 times. I'm guessing a total of two or three ounces of CatSip have stayed down. When she throws up, I know it hurts her, because she lets out these long, horrible meows, and her eyes get huge. I just so wish it could be me.

Please, God, not my baby. Not yet.

My autism

2011-03-17T18:04:00.003-04:00

This is so big; I don't know that I have the words inside me to get it out. To warm myself up, to get the words started, I'm going to tell you that I came home to an apartment floor just covered in kitty throw up. Elsie seems to be flaring, and that scares me. So, please, please pray for my cat.

So, onto bigger things, I guess. I read a lot online (and offline, in books). I read from so many parents, and it's interesting to see how parents look at their autistic children. There are two major camps that I see. The parent in camp A would say, "My son is NOT his autism. Somebody fix him. Somebody free him, please." They are angry at autism, they want it to go away. Parents in camp B would say, "My child is an incredible blessing of a person. People need to learn to accept him, because he has so very much to give." Some parents pull from both camps, and I'm sure some think something else entirely, but those are the two predominant viewpoints that I've experienced.

I want you to consider camp B for a moment. Have you ever noticed that, by the time children with autism turn into adults with autism, no one is saying how beautiful, hard-working, incredible, honest, pretense-less they are? The words I hear describing me are more like difficult, impossible, a behavioral challenge, "severe behaviors," frustrating, exhausting. This is from family, friends, and staff. My BSS couldn't believe that I, a (her words!) "pretty, intelligent, friendly" girl, would have horribly low self esteem. I didn't say anything, because my words failed me. But I can write it... are you kidding? How could I have anything but low self esteem? Look at the words that are used to describe me on a daily basis. When that is what you hear day in and day out, what do you think I'm going to see in myself?

A problem that seems to keep cropping up with people who know me, even those who know me very well, is that they want to be friends with me until I... get autistic on them. Until I misinterpret them and think they're frustrated with me when they're not. Until I melt down in public. Until I can't work, can't go anywhere alone without panicking, until I communicate something very poorly. Then, they get angry with me, and their words can be harsh, and it's very upsetting. It ends friendships... many.

My therapist pointed out that I'm a bit of a paradox in that I simultaneously do not much care what others think of me while also caring so, so deeply that they like me. And when a good friend rejects me based on "the way I am," when it's just too much for her, it makes me want to stop being myself around anyone.

I wish people could accept some of the pardoxes in me. That I am at the same time highly intelligent and have no common sense. That I can write a book but can't interpret almost any nonverbal signals. That I can think on my feet but not speak on my feet.

This is my autism.

My autism is being too honest and hurting feelings.

Having so many words but limited ability to express myself, some times more than others.

Seeing the world, and people, in black and white.

Not understanding pretense and getting upset with people who use it overtly.

Having ridiculous anxiety, especially in social situations.

Needing, needing to hear about my cat, even when you're soooo tired of telling me about her.

Having immense changes in abilities from day to day.

And therefore never knowing what to tell you to expect (but, please, don't ever tell me I'm faking it.)

Being basically unable to successfully talk on the phone. Someone always ends up angry or frustrated or confused. Usually me.

Being furiously stuck on rules, whether my own or those imposed upon me.

Melting down, regardless of where I am.

Rocking, banging, hitting, flapping...

Misinterpreting everything... with a tendency to assume that no on likes me and therefore everyone must be angry with me.

Never "learning my lesson." In other words, I do not generalize well and need to be taught and retaught even if the situation is very similar to one I've already been taught.

This is my autism. Is it hard? Yes. I know it's hard. It's hard for me too!

But, at least to one person in this world, I like to think that maybe I'm worth it, not just despite, but in part because of it all...

Coming down skillfully

2011-03-15T19:01:00.003-04:00

So, third time in two weeks: I forgot my morning meds.

Someone just slap me, would you? This is just... not okay. I can't keep doing this.

As one would expect, the morning started off alright. I mean, the bus took 2 hours to get me to partial almost, but that's not that unusual.

As the day progressed, I could literally feel the anxiety under my skin. I was itchy and crawly and antsy. Finally around 2pm, the nurse (who was leading group) said, "Lydia, did you take your meds today?"

Oh, shoot.

I was like, okay, I'm still alright, and I can take them as soon as I get home.

But then... well, then, the bus didn't show up after a half hour. So I called. They told me he was 5 minutes way. Another half hour later (all of this time spent outside in the rain and cold), he still wasn't there.

He finally pulled up. "You're gonna have to squeeze on." What? I look over. He put a man in a wheelchair in the front of the bus, blocking the rest of the seats. I had no way to get on the bus but to squeeze past the gentleman in the chair. The man's arms were all bandaged, and while I highly, highly doubted I was going to fit through the 4 or 5-inch space, I knew that I wasn't going to try, as the one side of the space was created by the man's elbows. I could have easily hurt him, and I was not going to.

"Either get on, or get off and wait for another bus. Those are your options."

"I'm sorry, but there's no way I can fit through that space."

"I fit."

"That's great, but I know I can't. Nevermind. I'll get another ride."

So he sits and stares at me for 5 minutes while I call my mom, bawling. In retrospect and after Mom brought it to my attention, I should have told the driver that he needed to reposition the man in the chair in the back of the bus (like they did this morning). Or move the chair so I could get on, then put it back. But I didn't think of any of that. I was miserable due to the lack of meds, and I'd been outside for over an hour, and I had to be home for a 5:30 BSS meeting.

While I waited for Mom, I melted, and went in and found my therapist who helped me to calm down and think a little and push my BSS time back a little bit.

In the end, Mom saved the day and came and got me and brought me home. She will be on the phones tomorrow regarding the ignorant driver.

I came home and did Operation Calm Down. I held Elsie, played laser light and made her dizzy, put on Food Network, lit my lavander candle, and inhaled 3 bottles of Glucerna for dinner. Oh, and I took my meds, plus a couple of klonopin for immediate effect.

I know most people would see the meltdown and think of how I need to improve, but honestly, I'm surprised with how well I handled the situation. Well, except when I whacked Mom for trying to touch me... but that was out of my control. But seriously, I found my therapist, and there was no self injury, and I was breathing deeply the whole time. ...better?

Apartment pictures (finally!)

2011-03-12T16:29:00.014-05:00

Okay, after a 20-minute knock-down, drag-out battle with Blogger, I think I've got the pictures loaded and in order.

Mom came over for a few hours and helped me clean today (read: she scrubs, I whine and pet the cat because everything's out of place while she cleans and I hate the vacuum, which ran for a total of almost an hour. But really, when given one specific job, I can do that. So, one thing at a time). My apartment is kind of the perfect balance between super-clean and lived-in right now, so I thought I'd take some pictures.

This is when you walk in... right in front of you is a closet with a purple curtain on it, and that houses Elsie litterbox and other cat essentials. Since I didn't think you needed to see that, I turned a bit to the right to show you part of my living room. Note that I currently have no curtains and am using my Nemo blanket to keep the sun out of my eyes.... oh, well.

Turn more toward your right and you see my couch and bookshelf.

More to the right and you see my coatrack, the kitchen, sewing machine, and the doors down the hall (closet, linen closet, and bathroom).

There's the little kitchen.

This is the only really interesting part of my bedroom... my bed is just purple and on the floor (box springs and mattress directly on floor). You can see all my cards and pictures and who toward the bottom left there's a lady's face (it was Leigh's in college) that I put a fake mustache on... and of course my dolls. Felicity, Samantha, and Josefina.

And of course Elsie P and I did a mini-photo shoot :) Here's one of the better ones. She turned 13 on March 2nd; doesn't she look fabulous?

20 years too late

2011-03-11T11:03:00.004-05:00

I'm still so done, so this will not be eloquent.

Met the team. Like them both, I think. Need more time to really know.

Behavioral support staff uses ABA (kind of the gold standard in autism treatment). Start with another interview (though I'm not sure why, because we just did a 2 1/2 hour interview) on Tuesday evening. Then FBA (functional behavioral analysis... looking at each behavior in terms of the antecedent, behavior, and consequence, to determine the purpose of using different behaviors). Then we get going.

Community inclusion starts hopefully the week after that, just a few hours on a Monday or a Tuesday. Maybe we'll go to the shelter and help out.

I'm stuck in a predicament. I have almost no food in the house. I can eat not very much for the next 24 hours until Mom can take me shopping, or I can attempt to go shopping myself, which takes hours and tears. Still haven't decided. (Update: Went and got a handful of things, so no starving will occur here tonight).

Like I said, not eloquent.

Meltdown Queen

2011-03-07T19:52:00.003-05:00

I'm sitting in Panera... my mom is talking to our Korean ESL student and I'm occasionally interjecting (fun fact: Did you know I'm actually a tenor?).

But I'm so done. So, so, so done.

I melt daily. And then there's the panic attacks.

So done.

The supervisor for my Waiver services called me an hour before our meeting today to say that things "got away" from her and that she didn't ever call my Community Inclusion (CI) person. So, we can't meet today, sorry. Can I meet tomorrow? Well, no, I can't. Or Wednesday.

So we'll meet Thursday. Okay, that's qualifies as last minute change in plans, and cue me running into the hallway, bawling.

Then she calls back with the CI on the other line, and I could tell the CI was uh... angry. Not happy. Miffed. Something. What a way to introduce myself to the new staff.

And as she got off the line, I asked the supervisor if we would be on for next Wednesday for Bible study. Oh, actually, she's not available Wednesdays at all. I mean, the ONE thing I wanted to do with CI, and I can't do it.

So now I'm left to "use" my friends, who are kind enough to help me in the crowds and through the panic attacks, but really? It's not their job. And I feel really, really guilty for it.

So done.

Humbled

2011-03-05T17:20:00.002-05:00

I've never, ever done this before, and I don't feel right doing it. Basically, I'm slightly desperate, and I can't give up until I'm sure I've tried everything.

So, I'm trying to get a diabetic/autism assistance dog. The dog would be able to detect high and low blood sugars and alert me to them (having had diabetes for 20 years, I no longer feel when my blood sugars gets too low or high very well at all, and it's dangerous), and it would help me out in public, with panic attacks, crossing streets, etc.

I was prepared to have to raise a ton of money for the dog, and still am, but now, I'm stuck before we even get there.

There is literally no one who can train my dog. The organizations that train diabetic alert dogs will not train one for someone who lives in Pittsburgh.

There is a trainer in Cleveland who says she might be able to help me train my own dog (which I am up to doing)....

The kicker? She wants $125/hour just to sit down and talk to her in person about the dog. I've never heard of charging for an interview. But she's kind of my only option. I would have to travel to Cleveland (2 1/2 hours each way?) and back along with paying her for the consultation.

I am prepared to approach organizations about my fundraising and getting family involved when I'm raising money for the actual dog... but I don't feel like I can do that just to raise money to meet with a potential trainer.

So, as humble as it gets... can anyone help me?

One idea for you

2011-03-02T17:11:00.002-05:00

Does anyone watch Parenthood? I don't. I only watch Food Network. But, I did see a few clips of the last episode where Max overheard his father shout to his uncle that he has Asperger's. Later, sitting down with his parents, Max asks what Asperger's is, and his parents fumble around trying to explain. His mom cries. Max leaves with not much better of an idea about what he has, other than that he doesn't know anyone else who has it and probably feels very alone.

So now that we all know how not to tell your child about their autism, how do you do it? I'm just going to give you my take on it. You can take it, or leave it, or change it, or whatever you want to do with it, but this is what might have worked when I was younger.

"One of the best things in the world is that everyone is different. There are no two people alike (personally, I would say something more like 'God has created everyone differently,' but do with that what you will). We are all good at different things. Some people are really good with their hands, and they might become artists so that everyone can enjoy their beautiful art. Other people are really good writers, and they write books for everyone else to enjoy. Some people's brains make them really good doctors, and they help others by healing them. Everyone who meets you knows that you're really good at learning about different dinosaurs (random skill), so maybe one day you can be a teacher and teach people about dinosaurs. What are some other things you're good at? (let the child answer)

"Everybody has different things that they need help with, too. (random example) Do you remember when we painted the living room? I needed help from your dad to reach the high spots and put on the new wallpaper. That's okay that I needed help. Sometimes you need extra help knowing what to say to your friends (or staying calm, or sharing, or learning at school.... whatever applies), and that's okay too. We all need help with some things.

"But here's the really cool thing. Some people are a very special kind of different. These people are often really smart. They're really good at one special thing, like you and your dinosaurs. These people also might need some extra help to make friends, talk to other people, (insert things your child needs help with here). Doctors say that people like you, who have these certain strengths and weaknesses, have something called an autism spectrum disorder. There are a few different kinds of autism. The kind you have is called (insert specific diagnosis here, if you want). People can have a little autism or a lot and need a little help or a lot of help with different things.

"It's important that you know that autism is not a disease. In fact, it's not even a bad thing. It just means that your brain works differently than most people's brains. All of us in your family and your friends think that autism is pretty cool, because it helps to make you who you are. Some people with autism have done big, important things, and someday you can do those things too. That's what parents, teachers, and doctors are here for- to help you to be successful.

"Do you have any questions about what autism means or how it affects you?"

Personally, I could have handled this conversation by preschool age. I might have done better if my mom wrote it down and allowed me to read it, then gave me as much time as I needed to process and ask her questions. I remember when my mom had the other Talk with me (haha, I know). I was about 5, in preschool, and she didn't hold anything back. She gave me twenty four hours of time with her to continue to think and ask questions, and she answered every one. Do not rush your child. Allow him to think and process as long as he needs, then make he knows that he can continue to ask you questions for... well, forever.

Again with the "personally," I feel that a child should be informed of his autism by school age. If this conversation isn't age appropriate for a 5-year-old, either let me know and I'll see what I can do, or do what you need to do to make it fit your child, but please do not continue to hold off on letting him know because you don't know what to say or because he hasn't asked questions. If you wait for him to ask, it means he may have been ruminating on the issue for a long time and has finally decided to ask. You don't want him to wonder and worry about why he's different.

Of course, children are totally individuals, and you have to do what's right for your child. There's no way I can say that "age five is it," because each child is different. You know your child best.

Tiny update

2011-03-02T15:30:00.003-05:00

I realized last night, when I went to take my evening meds, that I'd never taken the morning ones.

Uh... that's... 150 mg Zoloft (depression), 30 mg Buspar (anxiety), 300 mg lithium (OCD), 60 mg Geodon (meltdown prevention), and the thyroid med.

At least I know I'm not losing my sanity! Back to normal, albeit a tired normal after the day I had yesterday, today.

Trying

2011-03-01T19:57:00.006-05:00

Today tried really hard.

I woke up 6 minutes late, with no alarm having been set (yet sure I set it...), so that rubbed me the wrong way. Mom forgot to call me, too, so 6 minutes late I was. I can get ready in 20 and give myself an hour, so this 6 minutes wasn't needed, but it did put a little bump in my routine.

The drive to group was horrendous and stressful, as always, and leaves me crawling by the time I get there.

Then there's The Room. Partial takes place in a small (smaller than my living room in my one-bedroom apartment) room. There are at times 15 people in that room, and we are shoulder to shoulder. And people talk in that room. Typical conversational volume to you, after a short term, is more than my poor ears can handle. So there's that piece of the puzzle...

And then there's The Guy. There's a guy in group who is either on or off. No in between. On is, frankly, diarrhea of the mouth (sorry for the image, there), at a rather loud volume. Off is totally zoned out, even asleep. He spends roughly equal amounts of time in each state. Once he starts talking, he doesn't stop for nary a breath, until someone literally tells him he has to stop. Then sometimes he still tries to keep going. And because My Spot is by the window and he got booted out of his Spot, he now sits right beside me and directs his talking at me. I don't pretend to listen. I know I don't take cues well either, but I can tell if someone is ignoring me.

Between The Room and The Guy, my anxiety was really building today. Oh, and then at some point Leigh mildly snapped at me, because I didn't understand the way she said something and didn't leave her alone when she needed to be left alone. Didn't help things. I kept leaving The Room to sit in the hallway, but out there, people kept walking past, which also made me anxious. When the therapists came by to tell something to the whole group and asked me to go back in, just the thought of going back into The Room sent me into a panic attack. Lovely.

Cats, breathing, talking, therapists, all of this later, I reentered The Room for an hour and finished the day.

Then, I had to call the People on the phone to set up my ride for the next few days. These people are, well, mean. They are cranky. They are rude. They yelled at me. All over setting up a ride through a company. I don't do phones, first of all. I got confused and confused the lady and, as expected, she yelled at me. Start the crying.

And the crying leads to a meltdown. Sadly, perhaps, I'm used to such things while I drive and don't even pull over anymore. I can control it until I get home.

But then I got home and REALLY melted. Full-blown yelling, crying, biting, hitting, icky, horrid meltdown.

I'd love to say that I successfully used DBT skills. I really tried. I did. Or even the cat. That didn't work either. I breathed. Nada.

So, I took a milligram of klonopin and turned all lights and sound off and laid on the couch until I calmed down. I'm not even tired from the klonopin... just breathing normally, finally.

The ideal way to handle myself? Perhaps not. I try not to over-rely on meds. I take klonopin every 2-4 weeks on average, so I don't really think I'm abusing it, but I always feel like I'm taking the easy way out when I take it and zone myself out.

It did, however, give me the ability to use skills and cat and hot bath and whatnot so that I could stay calmed down, so it's not all for naught.

The last place I want to go is to group tomorrow. I don't know if I'll be able to go back into The Room, especially if The Guy is there. I do know that I will go armed with sunglasses (to ward off the evil lights) and purring CD on my mp3 player, which is charging.

Another day, another meltdown. And so we try again.

Funny way of saying things

2011-02-25T15:13:00.003-05:00

Mom: Lydia, can you bring in the groceries?
Me: I'm very nervous!
Mom: What?
Me: I'm very nervous!
Mom: I heard you. Why are you nervous?
Me: Because there's ice behind the car and the groceries are in the trunk.

(This one I actually caught before I said and rephrased, though, so this is a "what almost happened" example).
Me: Dana (therapist running group), my ears are hurting.
Dana: (she would look at me with a confused, scrinched up face). Excuse me?
Me: Could you please be a little quieter?

Me:... (finishes a story). Now what do you want to tell me about?
Friend: What?
Me: What do you want to tell me about now? What do you want to talk about?
Friend: The usual way to ask that is, "How are you?"

Me: Is Elsie pretty or is she funny looking?
Leigh: What are you anxious about?
Me: Going on the retreat next weekend...

(Just now, on the phone with Leigh...)
Me: Ughhh... my words are constipated again!

Anyway, those are a few tidbits from the past few days. I don't know how I do it, I just seem to have a strange way of getting my point across. My therapist noted that a lot of times what I say is simply very "me" centered, when someone would expect a "you" statement (ergo, my ears are hurting versus can you please speak more quietly?). Given that I'm kind of 23 going on 12, this makes a lot of sense developmentally.

Personally, I think my way of speaking makes a lot more sense than the socially conventional way. Even if it's not the words most people would use, I find it strange that they sometimes don't understand what I'm saying when I think I'm being very clear.

For the time being, I guess it's okay, because people usually tell me that it's "cute" or some version of such. But you know, cute is okay when you're 23 and look 16. What about when you're 43, or 63? Can you still pull off childlike and cute? I worry.

I have a cat

2011-02-24T15:30:00.002-05:00

The sentence "I have a cat" (or another frequently repeated cat phrase; there are three of four of them) serves three purposes for me:

1. It's a filler, much like your "um" or "uh."

2. It's comforting when I'm anxious.

3. It's almost like a verbal tic.

I can't remember now what brought it to my attention, but I realized in the last week or so how much I talk about cats. I mean... by any standard, it's a lot. "I have a cat" pops in mid conversation (as does, "My cat is pretty, right?" or frequently in my head or to the cat herself, "Don't worry, Elsie. You're a better cat than any of them," which is from a Disney thing.) Sometimes it's just chatter about cats, my cat, your cat... any cat.

Mom and Leigh both report, er, frustration and fatigue regarding the cats, and I'm guessing that other people feel the same way and haven't told me. When the therapist asked the group "if she really does it that much," they all responded with an emphatic yes. They are right.

My therapist suggested that I use a technique that is used for people who are extremely shy. She said I can write a list of other things I like and refer to it frequently in order to find other topics to discuss. I'm working on this. It's hard.

I want to talk about cats. It's fun and enjoyable and it makes me happy. Yes, it's compulsive... but I like it.

I must admit some annoyance at those who do not want me to talk about the cats. I don't particularly care about some things others talk about, but I do my best to listen, you know?

But, the world can't cater to autism, so autism must cater to the world. And so I shall try.

Almost a month at home...

2011-02-22T19:14:00.002-05:00

I've been home for almost a month. Things were really shaky there not too long ago but, at least today, I'm doing... okay. Dare I say well? Maybe I wouldn't go that far.

I get up every morning at 7 and get ready, then leave at 8 for the hour-long, 20-mile drive to partial. I'm there from 9-3, and then I make the same (but shorter in time, longer in miles) drive home.

At home, I clean, stop at the grocery store if I need anything (which is at least twice a week), exercise, make and eat dinner and sometimes a snack, play with the cat, sew, computer time, put things away, mess with my dolls, and I'm forever vacuuming because Elsie P makes a mess with her cat litter on my dark brown carpet.

Of course, today the roads were so bad that I didn't get to partial. My car was plowed in, and I sure don't have a shovel lying around my one-bedroom apartment. I tried to dig it out with my feet, and did get out of my spot, but the roads weren't plowed yet. I grumpily came back in and went right back to sleep. Woke up two hours later, and with the hour long commute, didn't think it was worth it to go in at that point just for the afternoon session.

One of the things we learn in DBT, one of the skills, is called effectiveness. Effectiveness, in this case, refers to "doing what works for you." I'm finding ways to use effectives all throughout my day... when I wear earplugs or headphones at church, the movies, while I vacuum; when I hang onto a squishy (Do tell me you know what a squishy is. I don't know how to explain them. Little squishy creatures that squish?) so that my hands don't pick; when I "go to the bathroom" in public places to get a little bit of my own space (as long as there aren't any jet-like handryers in there, it works pretty well).

So, I need to use some effectiveness to plan for the women's retreat I'll be attending in March. It's at a hotel about a half hour from home, and there will be worship music with a band, a speaker, and small group discussions. My hotel room will be with a good friend, just the two of us, so that will be very good to have "my" space as opposed to a 4-person room with strangers. I'll bring earplugs for the worship band and find a nook to disappear to somewhere nearby if the music is too loud. I'll bring my laptop for after things are over for the night to zone out with (my friend can go to the pool or do whatever she wants and I can chill silently in the room and give myself a break). I'll bring Tigger or somebody, just in case. I'll mean to bring the klonopin but will likely forget it, because I always do.

But just between you and me? I'm nervous as all get out about this retreat. It's been a long time since I've done something like this without my mom or Leigh present. Maybe even a long time as in forever.

Usually, when I stretch myself for something, it turns out well and I kick myself for worrying so much. Usually...

Rant

2011-02-20T19:20:00.003-05:00

Maybe you haven't noticed, but I am quite the spelling and grammar policewoman. I read and reread everything I write to ensure that my speedy fingers haven't let anything slip. I try to fix all typos. I carefully consider my commas. I rarely, if ever, use any shorthand.

I participate in several message board communities: One is for parents of kids with autism (because the only board for adults with autism... well, I've talked about that before, but I can't stand it, to sum things up) and the other is for adult collectors of American Girl dolls. On the AG board, there is a rule that members must use good spelling and grammar to the best of their abilities. No shorthand nonsense or anything like that.

But the other board... sigh. One member to my knowledge has never used any puncuation of any kind can you imagine I do not read these posts I simply can't make sense of them. Other people Randomly capitalize What they think is Important and leave out any question Marks do you know what I Mean. CANT FORGET THE SHOUTING POSTS EITHER. Others include so much shorthand (u got 2 no wat i mean wit dis 1) that it looks like a 12-year-old wrote it via text message.

I have nothing against people who struggle with spelling or have limited English. It's sheer laziness that drives me nuts. If you would like us to take the time and consideration to answer your question, then please, give the rest of us the consideration of your best composition, or at least a readable one.

Anyway, I would greatly love to complain about this on the board, but... I won't. So I'm complaining about it in my domain where I can kind of say whatever I want. If I don't complain somewhere, I'm going to burst.

I'm thinking that this makes me a bit of a snob; as in, I'm better than you because I attempt to type like an educated human being (which I'm fairly certain that you are one, as well, and thus have generally the same capabilities to use a keyboard and synthesize a post as I do). To be clear, I'm not asking for college-level composition, here, but rather... about 3rd grade would do. Honest mistakes? Typos? A rogue apostrophe? One or to their/there/they're or your/you're (do people even know that "you're" exists?) errors? I don't mind a bit. Just put a little effort into it, and we can be great friends.

Now, if you can use "your" and "you're" or "its" and "it's" correctly in one or two sentences (up to you), you may ask me ANYTHING you want (I mean, adhering to generally accepted social guidelines), and I'll answer. Or if you can think of a better prize (because I can't right now), then sure, that too. Just please, redeem my hope in the future of grammar?

I refuse

2011-02-18T19:51:00.002-05:00

So, I listen almost exclusively to KLOVE on the radio. It's a contemporary Christian radio station with no outside commercials. While I don't easily get offended by another person, I do have strong feelings about some of the messages portrayed in modern music and basically, prefer not to listen to it. I go as far as asking if it's okay if we turn the radio off and talk, or put on another station, when I'm in the company of others. I can truly feel the difference the music makes in my mind, my attitude, and my actions. Okay. Soapbox done.

Now, there's a new song my Josh Wilson out called I Refuse. It's about refusing to sit around while others do what God has asked you to do yourself. The song's alright, but it did get me thinking... what am I doing right now to help others? Yeah, I help out with the kids at church once a month, but is that really all I can manage to do? I know, I'm in partial. I know, I can't work for the time being. I know, I panic at loud noises and crowds... but still, mustn't there be something I can do?

And, as always, my former place of employment comes back to mind. Those cats need me. I can do things with those cats that no one else can. I can pet the unpettable, talk down the panicked, and love the unloveable. I haven't seen my cats since my last day of work on October 7th. Given that at one point I was having panic attacks at the sheer thought of the place, I wondered if I would ever go back.

So, enter tonight, when I came home from partial and wasn't ready to settle in for the night yet. I mean, 22 hours in a small space is a lot to ask of anyone, let alone antsy, antsy me. I ran through the usuals and came up with nothing. I called Mom... still nothing. Then I thought, hm, I could... maybe I could go back. Just for an hour, just ONE cat if I want to. No pressure at all.

Before I thought too long, I hopped in the car (which provides a stressful 45-minute ride to the shelter during which to build anxiety). My chest was throbbing by the time I got there. I went in and signed it and went into the "heaven room," or Cat Free Roam 1. Why heaven? Because there are 10 friendly cats, and you go in, and you're just surrounded by them. Tonight, someone was hissy/swatty at some other cats (I said, "Boy, Sylvia, you're not a cat person, are you?" so it wasn't so peaceful, but usually it's sheer bliss.

It was at that point I saw my former coworker, D (of the famous D and J pair, previously described somewhere in my bevy of posts). D was happy to see me but maintained professional appearances... asked how I was, but not why I'd left or where I'd been. We kept our conversation strictly to kitties and new and old favorites.

Then, just as I was leaving, I saw my buddy J. Oh, I've missed J. She is truly something else. She's in her 60s, has one tooth, and wears her hair in a bun on top of her head. She's an incredible worker and has been with the company something like 20 years. She practically ran up to me and hugged me, had tears in her eyes, and was clearly worried. She asked where I'd been, what had happened. You see, while I cut things off appropriately with my boss, to my coworkers, I just... vanished. Gone. I'm sure they wondered why. I told J that I'd been hospitalized several times, and she said, "The psych stuff? That panicking?" And I told her yes, that that, among other things, had been giving me a lot of trouble. She didn't push.

I asked J how she was, what was new around the shelter. She said that they're down to 2 to a shift (should be 3, really need 4 to function well). That would be almost like torture. No one will take the job for so little pay, because it's so much work. I told J that while no time soon would I be coming back to work, per se, I would love to come back on Sundays and help them out for a couple of hours. This would have me doing laundry, filling Kongs, and doing dishes. No direct animal care. But I love animals, right? Well, yes, but I can handle 250 animals in succession, go go go. I panic. When I do cats, I only get out one, then another, then maybe one more, and then I go home. I can't do the cat after cat after cat that feeding and cleaning entails.

So, moral of the story is this: I conquered one of my biggest fears with no extra medication. It was all me. Two of my favorite cats are still there, poor babies, and they definitely knew who I was. It was good to see old kitty and human friends.

Is this what getting better feels like?

Levels of me

2011-02-15T16:02:00.004-05:00

There are about, oh, 900 things I could write about right now. But I'm putting it all on hold right now for the sake of the topic that keeps coming back. It's the one that's missing from my book: faking it.

I was talking to my therapist today, and amidst discussions of repairing fractured friendships, being confident in alone time, and writing for me, I brought up the subject without really knowing where I was going (usually, I don't start to talk without a firm idea of where I'm going... that's not to say I don't very frequently lose that train along the way, but... at least I start out solidly).

First, the disclaimer: This is not unique to autism. Not by any means. However, I think that there is a specific kind of "faking it" that many (at least female) autistics learn to do to function.

Not real or "faking it": Engaged, verbally fluent, calm, understanding, self aware, mature, making "eye" contact.

Real: Spacey, losing my train of thought and stumbling over my words, anxious, self absorbed, childlike, emotionally unstable.

Before you think that it's best to always be real, consider the fact that the "real" me inevitably drives everyone away. At least, to date, it has. Secondly, consider that I would never make any progress in therapy if I continued in this state all the time, because I wouldn't be able to take in the skills or apply them. In order to have friends and in order to find a livable life and heck, in order to be able to blog, I absolutely must learn to use my "faking it" skills sometimes. Maybe "faking it" isn't the best way to put it.. maybe it's simply a different level of myself to which I must become more attuned in order to progress.

But it doesn't feel comfortable nor natural. I think, even when in therapy and thus functioning in a fully "fake" state, it's important to let bits of reality come through. My therapist told me today not to try to fake it when I get stuck on my words; simply say, "I'm stuck" and stop. I'm pretty good, though not perfect, at continuing to talk to through the stuckness until I can pick up again. She asked me not to do that... I hope she realizes how often I get stuck!

Sometimes, I envy the little ones who haven't yet learned to fake it. They just get to be 100% them, all the time. It's absolutely exhausting work trying to be older than you are, more together than you are, calmer than you are. That's the part that I think most everyone can understand, though, right?

Radical Acceptance

2011-02-12T10:17:00.003-05:00

AS. GAD. EDNOS. Panic disorder. Impulse constrol disorder-NOS. What am I missing? You get the idea.

But there's a new kid on the block. He's the one nobody likes. He's mean, he's manipulative, he's cruel, he kicks puppies.

To be honest, I've known in my heart for years that I had this diagnosis. As soon as I read about it, I was like... wow, that's me. Kind of like what happened with Asperger's. Now, there are a lot of symptoms of the disorder that I do not have, but there are also a lot that I do have. And I'm scared. 10% suicide rate? Little hope of recovery? Clinicians refuse to treat it? Oh, great.

Three conversations really helped me think this through, though. One was my mom. She said that while I may have this diagnosis, I'm far from beyond hope. I have a lot going for me, and especially because I'm aware that I have these traits (whereas most people with this disorder are not and refuse to believe it), I can work to counter them. The second conversation was with a girl from group, who said that she too has this diagnosis, and that if she could pick any diagnosis to have, it'd be this one. Why? Because it's behavioral and not chemical. You have little hope of changing the chemicals in your brain, but your behaviors are yours for the changing. Then, my dad said he's glad I got the diagnosis because it means I can learn about it and begin to do something about it, as opposed to letting it control me.

I'm honestly afraid to write this post and have you all suddenly walk out the door in sudden fear of me. I'm the same person I was before I had this label; in fact, I've had the disorder the whole time. And really, only the people who know me best are apt to notice the traits of it. Good and bad, that is...

If you ask me, this disorder is a killer combo with autism. It leads to social problems of its own, and then the autism means that I don't pick up on the social cues that people are turned off by me. It causes big, big messes, and I'm in one right now. It's so, so hard to apologize for things you didn't feel you did wrong, but then, I'm sure I did and just didn't know it, and I desperately want my friend back.

Compartments

2011-02-11T15:17:00.003-05:00

This is one of those "there's so much going on I don't know how to start, where to go, or when to stop" posts. And did I mention that I have a self-imposed 13 minutes time limit to write? Because then I need to do some things. You know, important things. Like get a shower (because I never did that today) and change my pump site and go to Mom's to go out to dinner. Things that need to be done.

I narrowly escaped a return to the hospital today. I'm not doing well. Though I'm sure most of you can read the details into this, I flat out refuse to expose the person by being specific. Things are currently very rocky with a very good friend. Maybe irreparably so. There was anger over things that I strongly believe that, while I can and will continue to try to improve them, they are part of my autism and not entirely within my control.

Add this to the fact that I caught my reflection in a mirror the other day without realizing it was me, and I truly saw one of the biggest people I've ever seen in real life, and... well... things got bad. I'm emotionally dysregulated, to use a DBT term, and I'm handling it poorly. I'm not sure that I could have stopped the spiral sooner, but the fact now is that I didn't, and here I am. The doctor at partial wanted me to return to the hospital, but we set up some outside supports (time with Mom, more time with Mom, calls from the crisis resolution network each day) and I think I can manage at home.

My therapist at partial did some really cool things in the midst of this, though. I admit my total misread of her "outside the box"- ness. She wants to read my book (being that I can't even afford my own copy right now, I sent her the manuscript) totally of her own accord and wants to do some emailing to let me process some things. Regarding the book, she wants to get an idea of where the AS diagnosis comes from from a behavioral standpoint, because she just doesn't quite see it, I guess. I think that may be for several reasons, including my rather superior ability to fake it when needed, my ability to hide what I'm really like, a result of my intelligence leading to improved superficial social skills (I kind of empirically collect data to determine some semblance of what is "normal," then simply copy, when I can). All this to say, at first glance, I have the ability to come across as an intelligence, neurotypical, albeit in some aspects immature, young woman.

And (this is the part I like) she says that diagnoses are for insurance and little more. She treats people with symptoms, not diagnoses. So the fact that I have many autistic traits is not so important as what those traits are. And, frankly, the autism isn't really my main issue right now... though, I would argue, it colors everything else. By the same token, my innate mental instability, colors the autistic symptoms, too. It's all wrapped up in each other.

Okay, not really done, but time is up. By the way, Elsie is sure trying to help my type today, so if you got any kitty-speak in the middle of my post that I missed, I apologize.

Bad number day

2011-02-08T07:36:00.004-05:00

I mean, maybe it's the autism in me, but boy do I love numbers. Love-hate is more accurate, I guess. I get so wrapped up in the amounts, measurements, quantities, that I lose sight of what's really going on.

The most obvious one right now is my weight. If it's up, I don't eat at least one meal that day. I know that weighing myself daily is just asking for trouble, but the prospect of eating when my weight has gone up and not knowing is just too much to bear. Don't for a second think that this applies to doctors and the like... no, I won't let them weigh me no matter what. The fact that the number on their scale may be different than the number on mine (which is the same as the hospital scale and is accurate)... no way. Can't handle that. One number per day, no more, no less.

I also get wrapped up in blood sugars, calories, minutes working out... you get the idea.

But a new number caught my eye today. "Doing well" is when I post every other day on here... 15/month. Doing "ok" is when I post every third day... 10. January? I posted 3 times. That qualifies as horrible. Now, remember that I said that I wouldn't be posting as much. Remember that I was in the hospital. I was taking a break, right? But that number is just too much. I don't like it one little bit.

And my weight is up today. And it's Tuesday, which is an orange day and sometimes even a 3 (days have colors and sometimes numbers). And it snowed so I have to go clean off my car, and me being me, I refuse to wear a coat, so it will be cold. Grump grump grump.

I think I need the kitty.

(Un)professionals

2011-02-05T20:59:00.004-05:00

I'm aghast at the unprofessionalism and unawareness I'm facing when dealing with my health professionals.

I've been seeing my PCP since I was 15. He knows that the only time my weight is within the by-the-books "healthy" range is when I'm half starved to death. He's seen it. So when I went to see him on Tuesday as a followup from my hospitalization, I expected him to understand why losing weight is not my top priority right now. He must have told me six times and six different reasons why I need to lose now. My broken foot will hurt less. My reflux will improve. I forget what else. First of all, all of that is utter crap. My reflux is the same that every person who has been through an ED faces when refeeding... it's my body relearning to digest food. My broken foot, without its boot on, doesn't even hurt! He's just trying to get me to want to lose weight now, which I obviously already want and don't need his help with, but my better judgment tells me to put it off while my body and mind recover. With the exception of the effects of starvation, I have literally no ill health effects due to my weight. Blood pressure, pulse, temp, cholesterol, it's all pristine.

That said, I'm switching doctors to one that my therapist/RD recommends, one that has experience with EDs, diabetes, psychiatry, all of that. We'll see how she goes. I hate to end blog posts this way, but I've had a long day and the words are simply done. No more. Maybe I'll be less anxious after my boys win the Superbowl :)

10 things NOT to say

2011-02-01T16:38:00.004-05:00

10 things NOT to say to a person recovering from an eating disorder (and they've all been said to me since I've been home by people who should know better because I've talked to them about this):

1. It's impossible to eat that much and still lose weight (I hear: You're a pig).

2. You wouldn't look so big if you wore normal clothes (I hear: You're massive).

3. From the doctor in the ER: Frankly, I see nothing wrong with you (I hear: Go home, keep doing what you're doing).

4. Well, you look better. (I hear: You don't look sick anymore. You look healthy. You look fat).

5. Wow, that target weight sounds really high (I hear: FAT... = you'll never be pretty).

6. Are you really going to eat all of that? (I hear: You're such a pig!)

7. I'm so fat/I look horrible/I need to lose weight- referring to yourself (I think: If YOU need to lose weight, I must be disgusting).

8. Well, I'm on a diet and I'm eating x calories per day (I hear: ...and you're a pig because you eat twice that much!).

9. Aren't people with EDs thin? (I hear: You're faking it.)

10. Can't you lose weight healthily? (First of all, no, I can't; that's why it's a disorder. Secondly, all I hear is "LOSE WEIGHT NOW.")

And a freebie: 11. I would never eat... insert food/drink here. I've been told that V8 fusion, all carbs, nuts, organic chicken, organic eggs, and I forget what else are all horrible for me. And that's just this week. My food choices are not up to my mom, my friends, my sister, or even my therapist: they're between my doctor, my nutritionist and I.

Busted

2011-02-01T09:06:00.002-05:00

Once upon a time, last Wednesday night at 6:08 AM, I was sleeping. I unfortunately dreamt that I was in the shower (if you know me, you know I HATE showers for sensory reasons. so this is starting off badly) and, worse than that, I knew that there was a large man on the opposite side of the shower curtain, about to attack me.

So what did I do?

Well, of course, I kicked as hard as I could. You know where. Only, I was actually in my bed, not the shower, so instead of hitting the shower curtain and subsequently the man, I hit my wall/window beside my bed. It. Hurt.

I walked on the foot that day, went to the gym on it... I mean, it hurt, but I never thought it was anything more than a bruise. I took my shoe off and... KABLAM! That thing swelled up and turned purple before my eyes!

When the pain, bruising, and swelling hadn't subsided by Friday, I called an orthopaedic doctor for an appointment and he got me in on Monday.

Basically, the xrays are clear, but he's certain that my first metatarsal is fractured. He put me in a hard-soled surgical shoe for 4 weeks and will re-x-ray in a week to look for signs of a healing fracture.

And the worst part: No gym for a month :(

Which is probably a good thing, because I've been losing weight rapidly (think a pound a day or more) this week on 2350 calories. Now, weight loss is okay, but that's too fast. So my calories are up to 2700. I feel like a PIG. Who loses weight on that much food? Apparently the girl with the magic metabolism. I know most of you are probably jealous that I "need" to eat so much, but honestly, this is also the girl who hates to eat, so it's kind of a nightmare.

I just keep telling myself that it will pass.

DBT and ASD

2011-01-28T17:17:00.002-05:00

DBT (dialectical behavioral therapy) is a widely used therapy program that was developed by Marsha Linehan for use with patients with borderline personality disorder. It is now used with mood disorders, abuse survivors, and substance abuse issues. The mood and anxiety program I'm in as my outpatient treatment program post-hospitalization is solely DBT-focused. At first, the worrier in me wondered if the fact that I knew DBT worked well for me meant that I had BPD (a diagnosis I really fear)... but using my wise mind (a DBT skill!), I know that correlation does not imply causation and that I should not worry about that.

Basically, DBT is awesome. It has four modules (mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness). Today, as skill practice, we played a game called Moods in which you choose a card with a mood on it and a card with a totally random saying or phrase, and you say the phrase in the specified mood. The moods aren't all easy ones, either... they include bashful, indignant, and hopeful. Try saying "there's gold in them there hills" indignantly. Go ahead. It's not easy!

Think about how much these skills can help a person with ASD. Distress tolerance? Emotion regulation? Interpersonal effectiveness? Mindfulness? I mean, come on, this is huge. Why aren't people using this for people on the spectrum?! The study I'm in uses a cognitive therapy, CET (originally developed for schizophrenia), to treat ASD, and it's not even as helpful as DBT is for me. These skills are also hugely helpful for someone with an ED, I might add. We focus a lot on disrupting the cycle of emotion dysregulation which leads to engaging in problem behaviors (for me, that's restricting calories and overexercising).

I'm so excited to finally be in a program that might actually WORK. That would be new. In a good way.

Just getting my feet wet

2011-01-25T18:15:00.002-05:00

Deep breath.

I'm not sure I'm ready for this, but here goes...

It's been 3 weeks since I went into the eating disorders unit at the hospital. My blood sugars, which were as high as 700 and as low as 39 (both really, really scary), are now in decent control. I'm off my insulin pump and back on at least 5 injections a day. My feet and legs are no longer swollen to double their size. I was on an IV for 3 days, because I was so dehydrated that I didn't pee for 24 hours. I had every GI issue imaginable, including 15 days of constipation. Yes. Days. My blood pressure was as low as 80/44, but it's solidly 120/80 now. My electrolytes in my blood were messed up and my I had starvation induced even-worse-hypothryroidism, but all of that is back to normal.

That's the difference between a diet and an ED. A diet is usually good for your body; an eating disorder can kill you, and, if left alone, will. Not everyone with an ED is at a scary-low weight, either.

So where from here? Well, first of all, I'm on a balanced 2200 calories a day. I got the go-ahead from the dietician at the hospital to work out for an hour 4 times a week in an attempt to lose one-half to one pound per week (as opposed to the 1-2 pounds a day I was losing before). I'm going to join the gym tomorrow when I get home from partial. Speaking of partial, the doctor at the hospital refuses to let me go to ED-focused partial. I have to go to general women's partial which focuses on depression and anxiety. Now, I'll give you that I have my share of anxiety, but I've had so much therapy for it, I'm not sure what else I can learn. I'm a little frustrated because I don't feel like I'm getting the treatment I actually need. But, it's not up to me, and I'll take whatever structure I can get. I start tomorrow at 9 AM.

This leaves one big question, which is the study I'm in. It's next door to partial, and it's from 3-6:30PM on Wednesdays, while partial runs 5 days a week from 9-3. It would mean one very long day (well, there will be several other really long days due to doctor's appointments and things like that). Basically, I'm strongly considering dropping out of the study. I don't see that I can continue with it right now, and it'll probably be a month before I have time and that's too long to keep skipping.

Elsie P and I are thrilled to be back in the apartment. Mom took me grocery shopping and I now have more food in my house than I've ever had... I'm stocked! It's neat to have options about what to eat instead of just one or two choices. I spent $80 on groceries this week, which I can't afford to do every week, but... well, we'll see how that works out.

Well, that's all I got for now. I'll let you know how this partial thing works out... I'm trying hard to be optimistic about it. They almost sent me to residential, but my insurance refuses to pay for it. Then they were going to send me to a month of respite, but there's a long waiting list so it's kind of pointless. So, praise the Lord, I'm HOME.

Lydia speaks

2011-01-03T06:08:00.004-05:00

Usually, when I sit down to write, I have things written out in my head and I simply turn them into type for all of you to read. At the very least, I have a mental outline.

Not this time. There's nothing up there. I don't know where this post is going...

Here's what I'm thinking: I have different worlds. You all belong to my autism world. That's probably my biggest world, because autism and Lydia are inextricably entwined with one another. You can't say, "Oh, that autism," or "Oh, that's Lydia." I am it, and it is me.

But at the same time, there's more to me than autism. There's more to me than Lydia. There's this pesky, leaching, deadly thing... and while I'm not sure this is the right thing to do or the right time to do it, I'm going to tear down the wall. I have an eating disorder. I've had it for 10 years in March. A lot of physical damage can be done in 10 years.

The surviving-on-500-calories-a-day thing really isn't so bad, in itself. But when you add 10 miles of running or skipping the majority of the insulin I'm supposed to take, things get rough. You'll never hear me say this twice, but I feel horrible.

So, after losing 20 pounds in 3 weeks (that, this time, I could actually afford to lose... other times I haven't been so lucky), my therapist wants me to head to the ER sometime this week. Everyday I go without insulin is another step toward kidney failure, blood toxicity, heart attacks, blindness, you get the idea.

Before you make a snap judgment and say, "Just do it! It's not that hard!" I ask you this: would you say that to me if I were plugging my ears at the movie theater? If I were crying in a crowded, noisy room? If I snapped when someone tried to hug me? No, you wouldn't. But many people who don't understand autism would, and do, and have to me. So, just because you may not understand EDs, it doesn't make the struggle any less real.

If you don't hear from me for a while, it's because I'm at the hospital. If something big happens, I'll have Leigh update you (er, I haven't exactly asked her if she would, but...hehe).

If you want to help me get better, please send cat pictures to autisticspeaks@gmail.com. They go a looong way.

I think I should rename my blog to Lydia Speaks, because that's what is is from now on. It's all of me. I hope that's okay.

just life.

2010-12-31T08:31:00.003-05:00

this writing thing sure isn't getting any easier. but i want to do it, so i'm going to give it a shot. forgive the scatteredness?

the first thing that comes to mind is new year's eve. it's probably my least favorite day of the year. i mean, i "went out" to a movie with a guy when i was 16, but other than that, i haven't ever gone anywhere or seen anyone. for quite a few years, i've either been crying because i'm yet again by myself or sleeping when the big time comes. today, i'll babysit from 6:30-9 (seven children; two with autism and one i highly suspect has asperger's) so wish me luck. it's been an uncomfortable, antsy week, so it should be interesting.

christmas was mostly really good... my dad gave me a sewing machine to make my doll clothes, my mom got me some cute odds and ends even though she already got me my laptop, and my sister got me my coveted, no-longer-available felicity american girl doll. she's beautiful and she goes even from room to room with me. so far she has a christmas dress and bonnet, a blue button-down shirt and brown polka dot skirt, a blue flannel nightgown and mob cap, and i'm just starting to work on a patchwork quilt for her. i can't say i'm anything wonderful on the machine yet, but i'm getting better and enjoying it.

i'm quite frustrated at myself for not being able to write any sort of cohesive blog post anymore. all i can do is kind of update and go over what's been happening. what happened to real posts? is it that nothing happens anymore, or is it that i just can't write about it?

Take 5

2010-12-14T07:12:00.002-05:00

For nearly 18 months (17 and some odd days, to be exact), I have faithfully, every 2-3 days, written a blog post. It's rare that I go more than 3, though I'm sure it's happened.

Before you panic about where this is going, let me explain. This is not a signing off, but rather just a break. I'm facing some demons in my life right now that require my full attention. It's stressful to constantly be thinking about the next blog post. I'll be back. It might be days, or weeks, or months; I might pop back in when something big happens and update you. But for the time being, I'm not going to look for things to write. I'm going to let the writing come to me. Fair enough?

Will you be here when I get back?

Birthday surprise

2010-12-10T11:32:00.002-05:00

After a wonderful trip for ice cream with friends, a visit to Mom's office, and a pot roast sandwich at Eat n Park, I headed home so that L could pick me up and we could go to the party (my Esther Bible study was showing One Night with the King at the leader's house). I was freaking out, texting about how nervous I was, when L texted me to say that she was really sick and just couldn't make it. I wasn't at all mad at her, but I started to bawl, because, well, I don't handle changes in plans well.

I had about a half hour to decide if I would still go. The answer seemed obvious. Go to a new place, at night, in the dark, all by myself, with no one even to meet there? I've been studying with these women for months, but I really only know H and L (who wouldn't be there) and the two women in charge (K amd M), a little.

But it was my birthday. I'm 23 now. I don't want social anxiety and autism to get the best of me all the time like it awlays has. Granted, this would be a huge step, because I don't go anywhere besides the church and the library without someone to keep an eye out for me. This would be the first time I truly flew solo maybe... ever?

So I called K, the women whose house the party was at. I asked if she had a pet, kids, or a spare room to escape to. She had all 3. K knows that I have autism and knows a little bit about what I deal with, so when I explained that I typically don't do parties, and never by myself, that this would be really unusual if I came... she said that she had some birthday things for me and would love it if I went, but understood if it was too much.

So I went.

I got here 15 minutes early. I can't walk into rooms full of people, so I get everywhere I go significantly early, and I think people are used to it. As L said, "I noticed that!" K introduced me to her dog, Ruby (a red lab!) and her kids, who are beyond sweet. I hung out downstairs with the dog while people filtered in. When I did go upstairs, I kind of wandered around by myself and didn't talk to people. There was over an hour of free time before the movie started. Finally, a woman who I actually ran into at Dr. J's office a few weeks ago after Bible study (she was there for her sons who have ADHD) came over and started to talk to me. While I can't approach people to talk to them, I'm just fine when people come over to me to talk... sometimes, maybe even a little too friendly.

So I talked for 10 minutes, which was good, for me. K gave me a birthday gift and said she had a birthday cake for me, which was so sweet. She asked if I wanted everyone to sing to me, and I said please no! I hate to be sung to, even by family.

I left around 9:15, an hour before the movie was over, but I was pretty tired. K and M saw me out and said that they were so impressed that I came. I like that they get it and understood how difficult it was. M really kept an eye on me and made sure I was alright. I emailed them both, thanking them for being so accommodating and helpful. I'm honestly kind of proud of myself for facing such a big fear. I can't say that I'll attend Bible study (80 women as opposed to last night's maybe 12) without someone, but it's a big step in the right direction for being 23!

Birthday dreams come true

2010-12-09T07:49:00.003-05:00

What's different about 23? Let me tell you a story, not for any sort of sympathy, but so that you understand the importance of today.

When I was 16, my mom and my best friend threw me a huge Finding Nemo surprise party. It had family and friends from all my different activities... school, dancing, color guard, camp. Everyone was there. I was quite sick, but that aside, it was amazing.

Several months later, that same best friend and I were talking online, and she told me to stop talking and quit responding to me (I was confused). We were supposed to go to a party that night, and she didn't pick me up. My best friend that I had spent every day with (vacations aside) for 12 years, for the next year and a half, never called again. When I called her a year and a half after the initial incident, she (frighteningly calmly) said the meanest thing I could ever imagine a person saying, and then meaner. I was bawling, and she hung up on me. That was the end of that.

My closest (and only) friend in college knew this story and promised that it would not repeat itself. It didn't, until she broke up with her fiance and got a new boyfriend and just... went away. Walked away from me on the sidewalk one day (I was on crutches, going slow), with the boy, and never walked back. When asked what was going on, also said some extremely mean things. Again, that was that.

If you're wondering why I don't think Leigh will do the same thing, you don't know Leigh. I mean, there's a lways the tiniest fear in the back of my mind (like, I fear checking my email because I might get a "I don't want to be friends with you" email... but Leigh just would never do that and it's illogical to think she would).

Anyway, back to my story. I think birthdays are the greatest thing in the world. It's a day to celebrate... me! I'm not a big fan of celebrating myself, because I'm shy and rather uncomfortable in my own skin, on other days, so I take full advantage of my birthday. I'm bad at waiting for people to call and give me birthday wishes... instead, I tend to call them because I'm so excited that it's my birthday! Not everyone, but definitely immediate family (just called Dad: "Hey, I'm supposed to call you on your birthday!"). It's a day I can drink as much diet soda as I want, eat whatever I feel like, and bug the kitty as much as I wish. It's my day.

My last 6 birthdays have been spent with my mom, mostly. Last year I actually had surgery on December 8th, so I was drugged and laying on the couch. But I had invited my whole Mom's side of the family over to celebrate, and they all sat on the floor and fussed over me, and I thought life couldn't get any better than that birthday.

Until this year. This year, today, I am going out with friends. H and L, two women in my church, are taking me to an old fashioned ice cream shop downtown. Then, tonight, my giant Bible study is meeting at someone's house to watch a movie (L is curbing my anxiety by picking me up and going in with me and staying with me, so I'll be fine). In between, I will go to Mom's work to be with my mom on my birthday, because that's the most important.

I don't know how to explain the gravity of this event. Friends. I have friends. Friends who are used to melt downs because their kids have them, who are used to anxiety, who don't mind my oddities and social awkwardness. Friends who seek me out and invite me over. Friends who take me out on my birthday. Although ice cream is a huge plus, I almost don't care what we do. Just being with my friends is more than I could hope for.

On writing

2010-12-08T11:50:00.002-05:00

People blog for different reasons. Some people do it solely for themselves, to process their experiences and document their journeys.

I am not one of those people. While it's true that I gain a lot from my writings, I don't really write for myself.

I write for you.

I write so that people learn what autism is like and what it isn't like. I write to dispel myth and promote truth. I write to clarify and demystify.

That said, my time as a blogger might be coming to and end. For one thing, my meds are making it really, really hard to write. I still enjoy doing it, but I feel like I'm not delivering when it comes to quality, especially. I have 50 followers on this blog, but I'm not really sure that anyone's reading. And if you're not reading, I don't really have a purpose in writing.

If you are here, if I'm wrong, if you do want to read what I have to say, just let me know and I'm happy to oblige. If I'm doing some good through this effort, I want to know it. But if I'm not, it might be time for me to set my keyboard aside.

Cardboard testimonies

2010-12-05T15:43:00.003-05:00

First, watch this.

Powerful, no? I thought so.

This is what we did in church last night. Pastor Betsy only preached for maybe 5 minutes, connecting cardboard testimonies to the end of Romans 8. "No, in all these things we are more than conquerers through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor no the future, nor any powers, neither height nor depth, nor anything else in all creation will be able to separate us from the love that is in Christ Jesus our Lord" (Romans 8:37-38). She said that by preaching on it, she could only bring it down, because the words are so perfect and so powerful. As good of a preacher as Pastor Betsy is, I have to say, no one can outdo the Apostle Paul's words in this text.

So, instead of a sermon, we heard her husband's testimony about his fall into and recover from drugs and alcohol, and it was a great testimony to the power of God in one man's life.

Then, about 10 people on the church staff came up to the front and gave cardboard testimonies. Someone I love dearly, whom I won't name, wrote "From the abusive hands of my dad to the loving hands of Jesus." One of the pastors, who is very open about his struggles, had "Clinical depression/Hope and healing." I almost cried, and I'm not a big crier. It was amazing.

Pastor Betsy asked us to let her know if we would like to share our own cardboard testimonies, and I emailed her to let her know that I would. What would mine say? I'm not 100% sure.

"ASD/GAD/Depression-NOS/SPD/ED-NOS/OCD/TS/panic attacks...

"A lifetime of doubt...

"The whole alphabet and then some...

...created uniquely and loved by Jesus."

What would yours say?

December cheer

2010-12-03T11:29:00.004-05:00

I'm getting pumped. Are you?

My birthday is December 9th. I'll be 23. I'm going out with two of my friends (can I say it again? My friends) around noon for ice cream at an old fashioned ice cream shop downtown. Then, that evening, there is a showing of One Night with the King (the movie about Esther) for my Esther women's Bible study. It will be a lot of people, and it's at someone's house and not the church, but as long as one of my friends is going, I think I'll at least try it.

Then, Friday, my family will have cake at Mom's house. Yellow cake with homemade chocolate icing.

On December 17th-19th, I'm going to Emmaus House again. Hopefully this time I don't get sick after 12 hours.

December 21st-23rd, I'm going to Maryland to visit Leigh and Joe.

We're having dinner at my aunt's on the 24th, Christmas at Dad's and dinner at Mom's on Christmas day, and my sister is coming on the 26th (she'll be at her dad's on the 25th, like I will).

I'm working on a Christmas dress for Felicity for when she comes (red with tiny white polka dots, white lace, and white buttons down the front and a red ribbon to tie around back).

Elsie and I have Christmas stockings, little ones, one with an E and one with an L, hanging on the wall at my house. How cute is that?

Mom and I will decorate her house on Saturday and my house on Sunday. Mom doesn't want me to have a tree because I might not stay in my apartment, so I'm going to use Sister's old tiny little tree. But I'll have a real tree if I'm still there next year, which is of course still up in the air.

What are your holiday plans?

Discrepancies

2010-11-30T20:55:00.004-05:00

Praise the Lord, my soul. Psalm 103:1

Sometimes, I get really frustrated. (Okay, I know, frustrated is basically my middle name, but bear with me here).

I have written proof that my IQ has dropped with age. As in, dropped nearly 50 points. I was a smart little kid.

What did they do with me? Nothing. Yeah, I was in the gifted program for an hour a week and did an extra project there each year, but academics were strictly regular class time. They basically had me wait for my ability to match my age, and then they started to teach me (beginning with algebra in 6th grade). That's six years of completely wasted time; little to no gains in basic skills from kindergarten through fifth grades. No, I wasn't social, and no, they didn't notice or try to change that. Yes, I had some minor behavior problems, and when I explained that I was bored, they told me I wasn't applying myself.

What if I'd had a diagnosis? Would they have looked at my differently? Sometimes I wonder.

So what are we left with? A nearly-23-year-old who is emotionally and socially much younger, who can't navigate much at all on her own, who spends most of her time alone... but who can't find ways to keep her mind engaged. I am never, ever content to just... be. I have to read, knit, sew, do puzzles, do sudoku, do crosswords, clean, go, drive, walk, shop... anything but sit. Even sitting and watching TV by myself for more than a half hour is rough. I'm autistic, but I hate to be alone. Luckily, I live with the best cat in the world. I could never truly live alone; I'd simply lose my mind.

I'm frustrated that what I could have been is so different than what I am. As the psychologist in charge of the study I'm in put it, I can handle anything academically (unless it's complicated fiction stories that have a lot to do with character!). So why aren't I a doctor or a lawyer or a meteorologist? Why does even the thought of working at Walmart make me need to take a pill or two. Just the thought. Time to move on, or I really will be after some meds...

Is what I am less than, or is it just different? Is the girl who lives on cash assistance somehow less than her stepsister who will be a doctor?

I guess it comes down to this: there is what I am in the eyes of the world, and there is what I am in the eyes of the One who matters. It's not really complicated.

(I can't get the rest of the psalm to paste itself here, and I'm losing patience; do a favor to yourself and look it up though, k? It's so good.)

Friends are expensive!

2010-11-27T18:46:00.003-05:00

I love Christmas. I love snowmen, and snowflakes, and Santa (Am I the only adult in the world that still holds onto the slightest glimmer of hope that he's real? Am I? If I am, I'm okay with that.), and red, and green, and decorating, and lights, and Christmas trees... everything! And I love, love, love to choose gifts for people and then give them to said people.

The past quite-a-few-years, my gifts have been limited to immediate family and Leigh, because, well, there wasn't anyone else. Even in college, there weren't friends. I was on no shortage of gift-getting, as my mom and even my dad/stepmom made sure I wasn't left out, but I did feel a bit of a shortage of gift giving. It's so much fun to pick out gifts. Leigh tried to help by including me in her college suite's Secret Santa, but I got her and she got me (and I knew that would happen!), so I just got to give/receive two things for/from her. So much for that.

But this year, do you know what different? I HAVE FRIENDS. It's making Christmas and birthday season exponentially better, not only because I have people to pick out gifts for, but because I get to celebrate with people and enjoy them during the season.

Now, my wallet doesn't so much like this. I'm still living on Cash Assistance and Food Stamps. I know each of my five friends will tell me that I didn't need to get something for them, but of course I did. Mom and I made it work: two gifts are handmade, one is sort of regifted (but not in a cheap way, in a... I love this and I really want you to enjoy it as much as I have, kind of way), one was bought months ago, and one Mom bought for me. A little nontraditional, perhaps, but it's going to work. I just hope everyone loves the things I chose for them. I hope they realize how important each of them is to me and how much this gift-giving represents for me.

Here I raise mine Ebenezer

2010-11-25T14:40:00.002-05:00

Then Samuel took a stone and set it up between Mizpah and Jeshanah, and named it Ebenezer; for he said, "Thus far the LORD has helped us." (1 Samuel 7:12)

"Spiritually and theologically speaking, an Ebenezer can be nearly anything that reminds us of God’s presence and help: the Bible, the Sacramental Elements, a cross, a picture, a fellow believer, a hymn – those things which serve as reminders of God’s love, God’s Real Presence, and God’s assistance are 'Ebenezers.'" (link for more information)

Appropriately timed, the things for which we are thankful are also our Ebenezers, as they remind us of God. In traditional Thanksgiving, blogger fashion, I'll give you my list for this year.

1. Always at the top of the list is Mom. She's just the best. Don't even try to argue. Maybe your mom is the best for you, but mine is the best for me, and I love her.

2. Always next is friends. Yes, I can make it plural now, and that's a wonderful feeling. A few of the women at church, one in particular, have really taken to hanging out with me and just making me feel loved, and it's just grand. I haven't asked if I can use their names on my blog yet, so I won't, but I'll tell you that one has two young boys with autism and works a lot with the children at church with me, and another has two young boys, one with some Aspergerish tendencies, at least, and 2 beautiful Tonkinese cats. She's teaching me some piano, and I watched her boys last week. Not to leave out Leigh, who is doing great and enjoying the warm weather in LA. We Skyped last night, and I'm not entirely sure if I liked it or not, but I wanted to try.

3. Always third is Elsie P. Secretly, it's hard put Elsie after friends, because they're really kind of tied. We're back in the apartment, and she meowed all night outside my door. But, if I open it, she comes in and tries to yank my hair out with her teeth, which doesn't feel very good, especially while sleeping. She transitions between houses seamlessly, I'm happy to say, and her stomach is hanging in there on the steroid.

4. I don't know what I would do without my church mentor. She's always there to cheer me up when I need it. She's great at finding little things, like puzzles or Mickey Mouse Band-aids, that I love. I look forward to going to the church and seeing her every week, and it makes my day when she comes to Saturday Night Worship and I get to do church with her.

5. Mom and I are tutoring a woman in English. She is from Korea, and she has two daughters. The younger one is quite shy, while the older is outgoing. D has started to bring K with her to our weekly Bible studies (that's how we're practicing conversation), and she and I are going to go see Harry Potter within the next month. Next weekend, we're going to see Tangled and bringing the moms. It's just such a blessing to have the opportunity to get to know someone, and maybe help them out too. D is teaching Mom as much about the Bible as Mom is teaching D English, and I get to be right there and watch it all!

6. I'm grateful to my doctors and therapists for doing what they do. It's so much more than "just a job" to them. They truly care and it shows. My doctor is a neuropsychiatrist who specializes in ASDs, and my therapist is not an ASD specialist but is just "on my wavelength," as Mom always says. I've been seeing her for going on 3 years. Appointments are a little rough now that Leigh doesn't come, because I don't think I know what to talk about very well, but maybe I'll learn.

7. My new thing: horseback riding! I am still in awe that I got almost a full scholarship to ride for 5 months! I only pay $5 a lesson (in addition to the $12 in gas each time). On Tuesday, I got to go off lead for the first time, and Casper bolted! Well, he started trotting rather quickly. I yanked with all my might, sat my bottom down hard in the saddle, and said, "Casper, whoa." Nothing. After about the tenth time, he did stop, and then got going again! It was really hard to keep him to the outside of the arena when I was pulling back so very hard. Anyway, it was great fun (I like to trot), and I wasn't hardly scared at all.

8. Emmaus House! We've had some very preliminary conversations about an autism group home with them. I think, given that I could keep riding horses and attend church (which they say they'll find a way for horses, and Mom will take me to church every Saturday), I would go. It's not that I can't survive in the apartment but rather that I do better when I'm around people. I'm happier.

There you have it. My Ebenezers of 2010. There are so, so many more little things, but this is just the 8 that immediately come to mind, and I'm not in the mood for 10, so I'm going to stop here. Off to eat some turkey!

This Christmas

2010-11-23T14:14:00.002-05:00

This Thursday, we Americans will sit down with our families and tuck into a turkey dinner that provides enough calories for two full days.

Maybe at your table, someone is missing this year. For us, it's my grandma. She was 82 and died of a stroke in May of 2009, and our hearts broke. She made our world go round.

But far away at another table, someone is also missing. This someone didn't get to live to the age of 82, have a family, become a grandparent. Maybe this child never even got to go to school. Maybe she never even took her first steps.

On September 11th, 2001, we lost approximately 3500 Americans in a very tragic way. Every single day, ten times that many children starve to death. I'm not saying it's wrong to mourn the loss of our countrymen, not at all, but who mourns the loss of the child in West Africa, where there is currently a huge famine? Who cares about that child? Are they no less valuable?

I'm not asking you to donate to charity, although if you feel led, please do. I'm asking you to get your Christmas gifts from a place that counts this year. This site is one of my favorites. All the animals we save from euthanasia, all the cancer we cure, all green we go is for naught if our people are dying and can't enjoy it.

You can make a difference for someone. If you can't afford to make a direct donation to help a person in need (and you get to choose exactly where your money goes, from stuffed animals for orphans to school breakfasts to providing chickens for a family), consider buying just one of your Christmas gifts from a Fair Trade source like The Hunger Site. If you're not ready to purchase, just go to the site and click the big yellow button, and a sponsor will donate a small amount of food. It can't get any easier.

God Bless, and Merry Christmas.

Timelines

2010-11-21T18:54:00.002-05:00

It's like pulling teeth to write a normal, cohesive post right now. I'm convinced in the lithium. I'll ask my doctor, but isn't it a known fact that people with bipolar lose their creativity when they're on meds?

But here's something that rattles around in my mind sometimes, and I thought I'd share it with you.

I was thinking that autism is more or less noticeable at different times in someone's life. Of course, the specific age-to-noticeability ratio varies from person to person. I'll just explain in my own life...

I can't put a numbe rof years or a percentage or any mathematical formula on my social and emotional delays. I know that at 5, I was probably closer to about 3 (still tantruming frequently, no control of emotions). At 10, I was probably more like 7 (still wanted to play games and with toys when my friends were outgrowing those things). At 15, I was socially about 10 or 11, still wanting one girlhood best friend when the rest of the crowd was into cliques and all that jazz. At 22, emotionally I'm still preteen, and to be honest I can't put a number on where I'm at socially. Kind of all over the place when it comes to different skills. I see my 9-year-old sister pick up on things I don't, but in some ways I'm more mature than a lot of teenagers.

But here's the part that rattles around in that brain of mine. When you're 5 and act 3 or so, it's fairly noticeable. When you're 10 and act 7, though? Not so much. Children mature at different rates, after all. A 15-year-old who is emotionally 10 is quite noticeable again, but a young adult who acts like a teenager isn't that uncommon, so no one really notices.

My mom says... I forget the word she used, exactly... but she says I'm on a plateau, developmentally. I'm not really gaining any new skills, not really getting much better socially, not really becoming any more independent in the last few years.

When you have a 22-year-old who acts like a child, it may be alright, but once I'm 40, people might really notice. That's what scares me. I'm a big fan of blending in as well as I can.

Alright, I'm completely posted-out. Can't squeeze... out... another... word!

Phases

2010-11-18T16:23:00.003-05:00

I've kind of been going through a non-writing phase. I'm wondering if the lithium has sort of sapped me of my creativity. I have no desire to work on my book (never got past the interview stage of it) and minimal ideas for blog posts. Nothing is writing itself, they way it used to do. Instead, I strain to find words for thoughts that aren't there. It's immensely frustrating.

I figure I can keep you abreast of my meanderings, anyway. This weekend, I'm going to Emmaus House, from Friday afternoon to Sunday afternoon. It will be good to get out of here. Then, sometime next week, I'll move back to my apartment and bring Elsie. Dr. Sutton says that the Service Provider should have contacted us several weeks ago, so he's off to find out what the holdup is. In the meantime, I'll try to stay busy at my apartment.

Here's what I do in a week:

Monday- help at MOPS at the church, go to another church friend's for a piano lesson, then in the evening help Mom tutor a Korean woman in English

Tuesdays- horseback riding in the afternoon

Wednesdays- Bible study in the morning, the study for 3 1/2 hours in the afternoon

Thursdays- This week I babysat. I'm hoping I can do more of that in the future.

Fridays- Break day. Library, errands, doctor's appointments, etc.

Saturdays- Out and about with Mom during the day then church at 6.

Sundays- grocery shop, watch football, help Mom clean

So as you can see, I'm not at a shortage of things to do. Add to that lots of reading, some coloring, a good bit of puzzling, talking to Leigh on the phone and Chloe online, going to my dad's to see the kids, Christmas shopping, and I have a full week. I don't feel the need to do any more than I am currently doing.

I still haven't reached a final decision about the group home versus the apartment. By moving to the group home, I would give up so much of my freedom. I love every one of my activities, and I would hate to sit around or do unproductive things all day. I would have to give up riding, piano, babysitting, Bible studies, all of that fun stuff, and I'm not ready to do that. But at the same time, I might do much better when surrounded by other people. Granted, they may not be people who will provide intellectually stimulating conversation, as they will have moderate-to-severe mental retardation, but they will be people, and that is a good thing. I think the decision will come down to how many hours of assistance I get in the apartment, and that is yet to be determined. No sense worrying in the meantime, right?

Just to update, I did get cash assistance yesterday; praise God, because now I at least have some income! I am not yet ready to return to work at all, and I'm doing way too well not working to want to mess with that. It's too soon. Maybe with a job coach, maybe in the future. But not yet.

I'm ready to go home now

2010-11-15T08:35:00.003-05:00

I'm counting the days until 2 weekends from now when I can go back to my house. Nevermind the fact that the Waiver still isn't processed and I'll have no staff... I absolutely cannot live here much longer. My stepfather was nothing short of ridiculous last night (angry that I only thanked him once for paying $6 for my dinner, and not twice or however many times he wanted to be thanked), and I've just about had it. Every time I think he's being human, he does something stupid and ridiculous again.

Maybe I'll start packing up and going home sooner. I can leave Elsie here for a few days, unless that'll set him off too. Then again, I hate to be at my house without her.

Hm....

In God's perfect timing

2010-11-13T16:56:00.008-05:00

Yesterday, I was home by myself all day with the exception of a couple of hours in the afternoon during which I got Mom a Christmas present, spent my free $10 at Kohl's (a hummingbird ornament and a pin for Mom, since she's gotten so much for me lately), and got the mail out at my house. So last night around 7, when Mom and Bob talked about going out for the evening, I piped up, "But Mom, I was home alone all day. I don't want to be home alone all night, too." I understand the need for "them" time, but can't they do it on a day when I haven't been home alone all day, like on a weekend?

Mom and Bob were tired anyway and decided to stick around, so I was content. Then, today in the the car, Mom and I were talking about building my own life, and she said, "Lyd, you can't put all your eggs in one basket." She said she thought I have too much invested in her, and that my life can't revolve around her as it currently does. When I asked for an example, she brought up last night when my only option was to be with her or no one. I said that it's not my fault that Chloe and Leigh and Sister all live so far away and that my friends at the church are married and have children and can't just hang out. I do have friends, just not the hanging out at the drop of a hat kind.

So, as I often do when I have a spark of an idea about something, I emailed Pastor Betsy and asked her if she could think of anyone in the church who might want to hang out sometimes... a high school or college girl or a single woman, perhaps. She can't think of anyone but will keep her eyes open and pray that mine will be opened, too.

All I can say is that waiting on God's timing can be really hard. I want to make a friend and make my mom happy, but I can't do that if God isn't ready to put that person in my life yet. I guess I could try to pull back from Mom a little bit and just spend more time alone, but I would hate that. Yes, this autistic person likes people (as long as it's one at a time!). I can entertain myself for a day if need be, but I don't like to be alone much longer than 24 hours.

One big decision I have coming up is whether to stay in my apartment or move into a group home. Mom doesn't think I'll get more than a few hours a week of help, so she thinks it's time to strongly consider the group home. That would mean giving my cat and riding, because I wouldn't have my car anymore, which I don't think I could do. Those two reasons are enough to make me want to try the apartment again, so I'm probably moving back in a couple of weeks (this weekend is already halfway gone, and next weekend I'm staying at Emmaus House). I wish I knew that, going back, I'd be able to stay there, but I'll just have to try it and find out. Scary, eh?

Praises and petitions

2010-11-09T20:03:00.004-05:00

I find myself thanking God so much lately... for the new computer (from which I type to you now), for horseback riding, for the doll I've longed for, for the fact that someone wants to buy my treadmill for more than I expected. Blessings continue to fall into my lap, and I don't know why. Well, I do know that the Lord wants to bless me, and lately He is showing just how true that is.

But I worry. Oh, I worry. I have no income. None. Once my savings is gone (all $120 of it), I have nothing. Yes, Mom got me my computer and some new clothes recently, and yes, I have food stamps so that's at least covered, but the big kicker is gas.

The solution is to go back on cash assistance. We went today and waited for well over an hour, and they were nowhere close to our number. So on Thursday, Mom is going to take me back, right when they open. It's in a bad part of town, where the people tend to stay up late then sleep in, so we're hoping few people are there when the office opens at 9 AM.

It's not matter of if I'll get the cash assistance, as I'm both disabled and not working so it's all but guaranteed; it's a matter of when. What if I can't be seen Thursday again? Or what if they need more documentation? How long can I make this $120 last?

Because my horses are riding on it all (no pun intended). On getting cash assistance ASAP. The horses are an hour away, 1/8 of a tank of gas. I could go to and from church eight or ten times, to the research study three times, in the amount of gas it takes to go to the horses. Mom says it may not be possible to ride.

But oh, if you knew how amazing it was today. Forget therapy; give me horses! Seriously though, they're more helpful than an hour with the best of the therapists I've ever seen. I felt so strong and confident and free in that saddle. Yes, I have a leader and sidewalkers, but I was steering that horse. For those 30 minutes, Casper is my horse. He likes to trot... a lot... so it's a constant, "Walk... whoa... walk... I said WALK! And he's super, super soft. And white (technically though, there are no white horses; they are grey). And so, so sweet.

And did I mention there are cats at the barn, one of whom is a long-haired baby named Molly and doesn't mind being held? Topping of horses with kittens.

At least for today, life couldn't get any better.

Just a bug in your ear

2010-11-08T14:00:00.002-05:00

Don't know what to get your child's teacher, therapist, or aide for Christmas? How about a copy of Interview with Autism? Never miss a chance to educate... that's what I say!

While I have your attention, guess who's starting therapeutic riding tomorrow?

Oh, and that same "who" also got her own Christmas gift really early this year... a new HP laptop. Next post should come from it!

Did I mention I can't sleep for all the excitement in my life lately?

Dr. J appointment

2010-11-05T09:30:00.003-04:00

First, let me tell you what Elsie P just did (and she did it yesterday too!). She put my computer in full screen mode, and I couldn't get it out. I had to call Dad, who told me to use Task Manager so I could End Task and then open it and try again. It worked. Silly cat!

Anyway, Mom and I went to see Dr. J (psychiatrist) yesterday. It started off okay, with her asking about my recent... adventures, if you will, and we told her what I'd been up to. She was glad the lithium is working and reminded me that I'll need blood work every 3 months (I already need it for diabetes stuff, so this is no big deal). Then, things got a little sour...

She said she thinks it's time for us to consider a group home. I said that the only options are for people with MR who need a lot more care than I do, and she said, "Well, you're not exactly what I would call 'high functioning,' now more than ever. You should be much higher functioning than you are. I don't know what keeps you from living up to your capabilities." That upset me, because I'm doing the absolute best I can, and now she says it's not enough!

Well, she said, "I think it's time for you to consider moving away from Mom. There are AS/ASD-specific houses in the Philadelphia area, and those would be perfect for you." She told us about the organization. I said that I will not move away. No. Way!

Dr. J thinks the apartment was a mistake, that I'm not ready for it and maybe never will be. Mom says I'm "at a standstill" as far as gaining independence goes and have been for years, so she thinks I've reached my peak.

I get the feeling that Dr. J thinks that the thing holding me back is that I'm lazy. As I told Mom, I'm a lot of things, but rarely am I lazy! And when I am lazy, it's little things... really little things. I'm never lazy with the things that matter.

Dr. J wants me to go back to work. Mom says not yet, but that we'll get a job coach (through the Waiver) and maybe I can get a preschool job at my church, where hopefully I would be accepted more and there would be less stress because of the coach. If not at my church, maybe another church. Anyway, that's my job goal. Less than 10 hours a week right now, for sure. The reason Dr. J wants me to work is that she doesn't want me to sit around too much. She says that volunteering isn't enough, that I need to work. Hopefully a church preschool job would appease her.

So even though it's going against doctor's wishes, I am going to go back to the apartment once the Waiver is finished processing. I'm going to have staff a few times a week, hopefully, and have someone come to take me places once a week, if that works out. I'll go to the library, Starbucks to hang out, go to the shelter to volunteer, help out at church once a week, go to Bible study, and go to church and help with the kids, and I'll go to the study on Wednesday afternoons. Isn't that enough?

I'm still upset that she might think I'm being lazy. I'm kind of offended, actually. There are just things I don't do: I'm not lazy, I do NOT lie, and I'm almost never mean. It's just the way it is. So, like Mom said, if people go accusing me of those things, I can know in my heart (and maybe even say to them) that I am absolutely not whatever they say.

Just some stuff

2010-11-04T13:47:00.003-04:00

Sometimes posts seem to write themselves. It's like my life is meant to be turned into blog form.

Other times it requires some effort, but I can scrape something together.

And then... well, and then there are times like this, during which there is no glimmer of cohesiveness to my writing. I'm wondering if the lithium has kind of caused the creativity to go out of me, or something, because I just haven't felt like writing, and that, now that is weird.

My brain is going in too many different directions to be organized. I mean, I'm on an American Girl reading kick (Mom and Sister say that if I get half the money, Sister will supply the other half-ish and go to American Girl Place and get Felicity for me for Christmas! I'm so excited! I'm refusing to spend a penny!) because I can't focus enough to read anything more difficult. But I'm enjoying the historical fiction (my favorite genre), so that's good. Still, 3rd-4th grade reading level? I guess if it's not hurting anything and it's making me happy, so be it.

Speaking of making me happy, yesterday at CET (the study I'm in) they mentioned internal yardsticks. Now, the first amazing thing is that I was listening enough to catch that. The second amazing thing is that they mentioned something fairly worthwhile. They said that they prefer us to use internal yardsticks to measure our successes and failures as opposed to the external kind. As much as I agree with this, isn't it difficult to do that? I know I like to compare myself to everyone around me. I get upset when Leigh is "passing me up" or when my peers do things I can't. I'm sure everyone feels this way sometimes though.

Holidays are tough around here. Emotionally, I'm still young enough that I want to participate in all the childhood traditions, like trick-or-treating. I mean, I probably could have gotten by, because I definitely look quite a bit younger than nearly 23, but I'm satisfying myself with the leftover Butterfingers that Mom gave out. It's not so much the candy I want as the experience. I actually stopped trick or treating when I was about 8, because due to the diabetes I had to give my candy to Sister (did you know that Sister has a name? It's Emily. I sometimes call her Sister to her face, too, though).

Driving is presenting quite a challenge lately. I've gotten big time mad people honking at me twice in two days, because I was going the speed limit and they didn't want to. I still feel like it's my fault, and I hate it.

Well, Mom and I are headed to Dr. J. We'll see what she says about this lithium deal.

Homecoming

2010-10-31T15:46:00.003-04:00

Things I missed about home:

ELSIE
Mom (although I talked to her 3-5 times a day, everyday)
Computer
Going places
Books (I ran out while there)
Did I mention Elsie?
Naps
Blogging
Comfy couches and chairs
Good food

Things I won't miss about respite:

It being assumed that I smoke/drink/do drugs
Hearing "SMOKE BREAK!!!!!" 8 times a day, starting at 6:30 AM
The train that was a hundred? two hundred? feet from my room and going over a crossing, so it tooted. Loudly. Three or more times every hour, including at night...
Thus, I won't miss sleeping in earplugs AND headphones.
One option for each meal, and if you don't like it you go hungry
Not being able to take my meds exactly on time
Nurses forgetting to give me meds
Being almost made to go to NA/AA meetings every night
The guy that refused to shower or wash his clothes for 6 days
Bathrooms that smell so bad I gagged every time I went in

Anyway, I could go on. It was determined that my problem was never really depression, but rather OCD. Basically, I had obsessive, intrusive thoughts. With depression, people typically want to act on suicidal thoughts. With OCD, the thoughts overwhelm the person, and they might be compulsed to act but they don't actually want to. I was put on a low (about half the usual) dose of lithium, which is used for severe bipolar, schizoaffective, etc. I could tell the difference after about 6 hours of taking the first dose. Now, I only get scary thoughts about 3 times a day, and it's much easier to "change the channel" in my brain. I had a really good doctor!

I did quit my job, however, and will have to go back on cash assistance (which is only $205/month) until I either get SSI or go back to work. I'm not in a hurry. I'd rather be poor that that overwhelmed again.

I'm staying at Mom's until the time arrives such that I can get staff at my apartment. Not sure when this will be, but, whatever. I'm fine in the meantime.

During the day I have to find ways to stay busy.

Elsie is super happy that I'm home. I hope Mom is too. Don't really care if Bob's happy or not... well, okay, I do care a little.

Sorry for the vagueness of what I'm about to disclose, but: I've been prayerfully considering doing some sort of advocacy for a long time, and an opportunity has sort of fallen into my lap, but it requires nomination, application, interview, etc. I have no idea if I'm what they're looking for, but it would be pretty cool. If you could send up some prayers that maybe something would come of that, if that's what God wants, then that would be awesome. I'll let you know more about it if I hear anything.

Just checking in

2010-10-27T16:24:00.003-04:00

This post won't be exciting. I'm limited on time.

I'm currently staying at a mental health respite center. Most of the people there are coming off drugs and alcohol as well.

Most people think I'm weird. One guy kind of makes fun of me for liking Disney. It's not a big deal, but it upsets me.

We have a computer and Internet access, but every. single. website. is blocked, so it's useless.

The problem turned out to be not depression but OCD, and I was put on lithium (a low dose, 300 mg). I'm honestly quite fine now.

I should be out November 5th. 9 days.

Decisions

2010-10-21T09:14:00.002-04:00

I have a big decision to make, and I don't have long to make it.

I know I'm not safe at home. If I knew that, say, on Monday, I could go to respite, I think I could make it. But I don't know. It could be weeks.

So my only other option is the hospital, and I'm leaning toward going, but I'm still not positive. Mom said she'll take me down anytime during the day, just not at night, because the DEC (emergency) is a nightmare at night. She's going to call me when my aunt gets to the office (family business) for my decision.

I'm halfway packed.

If I knew I'd end up on a good floor (young adult floor, depression/anxiety floor) I'd go, but I don't know that. I could end up on the autism/MR floor, which is wracked with the stench of urine and has people screaming 24/7. Not a place to get better. Last time I went, they said I was too "high-functioning" (not my favorite descriptor) for that floor, but what if the person doing the intake doesn't say that this time? What if there are no beds on the floors I like? What if, by asking, I make her think I'm a beggar (as in, can't be chooser) and tick her off?

I don't know what to do...

Tea and things

2010-10-20T15:11:00.002-04:00

Sometimes, I like to think that someone out there in Blog World is just sitting at the edge of her seat, biting her nails over what will become of the whole respite/hospital/home situation. I like to pretend that I'm interesting, sometimes...

But really, things move slowly. Today, George from the Bureau of Autism came to the house to do the SIB-R (an interview) about what I can and can't do, to see what services I need. It's funny how I can do some pretty complex things (provide a written report on an article from a technical journal, for example) but struggle with things like saying please, thank you, hello, goodbye, consistently and reliably. Mom's commentary: "That's the autism."

Reliable. That's my problem.

What I can do on a good day is so different than what I can do on a bad day. On good days I can definitely work. But then the bad days come, and I have to quit my job. So do I never work? It's not really fair to an employer to only be function 10 months out of the year, you know? Sigh.

In other news, Sister joined the junior board for Quality Services for the Autistic Community (or something like that) in NYC. She is also seeking to volunteer at the mental health ward at the hospital. Sister really tries. She's cool like that. I hope that I can take a page out of her book and do some volunteer now that I'm not really working.

I wanted to tell you that I have fallen in love with tea. Just regular, decaffeinated Lipton's, black tea. With milk and 1 1/2 big spoons of sugar (it's sweet, I know). It's delicious. I drink it multiple times a day, and it works just like a Klonopin. I swear. It calms me right down. So that's my new thing, tea. Now if my stepdad would stop yelling at me for slurping my tea, we'd be in good shape. Or if I could just get back in respite, where I could slurp as much as I want, and no one cares...

Say it with me

2010-10-17T15:37:00.002-04:00

I say: God is good!

You say: All the time!

I say: All the time!

You say: God is good!

Or if you're the founder of Emmaus House, Lorraine, you say what her aunt told her when she was younger: "God is good and He said He would!"

I have no idea in which direction my life is headed right now. All I know is that my funding ran out today and I'm back at Mom's with Elsie P. I don't know what tomorrow brings.

I do know that Lorraine and the head of the Autism Waiver, Dr. Sutton, are working very hard to pass my Waiver paperwork through ASAP and get me back to Emmaus sometime this week. But that's not definite... just what everyone is hoping for.

I don't know if I'll ever move back into my own apartment, as much as I love it. It might be manageable with frequent staff (like all waking hours), but not how it was. I just fall apart too quickly when I'm alone so much.

I don't know if I'll go back to work anytime soon. I'd like to stay on one day a week, but if I'm staying in respite for more than a few weeks at Emmaus, Mom's not sure it's a good idea to stay on at all. That would mean literally no income. None. Nothing. Nothing from the government right now, either. But then, in respite, how much money do you really need? Your food is paid for, gas is paid for, all the big things are covered. If I do quit, I hope it's on good terms so that someday, when I'm in my own place with staff, and Boss has an opening, she will hire me back. That's the goal.

The hard part is that what I'm capable of on a good day is so great compared to what I can do on a bad day. And there are different sorts of bad days. There are days where it is hard to move (I get anxious if I'm not in "my spot"). There are days when I don't eat much. There are days when I'm just horribly depressed. Regardless of the sort of bad day I'm having (autism bad day, anxiety bad day, depression bad day), it helps to have other people around, so respite is a good thing.

I'll keep you updated, and remember: God is good!

Hoping for a miracle

2010-10-14T18:53:00.002-04:00

Well, things can never be easy.

My funding for staying at Emmaus runs out Sunday. The Waiver, while approved, hasn't really been set up and so cannot pay for much at this time. They're trying to expedite the paperwork so that funding will come through. Insurance won't cover it because it's not mental health, technically (though they will cover a much, much more expensive hospital stay) and MR services won't cover someone with autism. I'm betwixt and between, just like always, and no one knows what to do with me.

So I probably go home, back to my own house, Sunday around 5pm. Getting me out of my environment helped a lot, and I'm safe here with staff. But can I really go from full-blown suicidal to ready to go back to my apartment in four days? That's what they're asking me to do.

In the meantime, it's wonderful here. There is no therapy, but I don't need therapy right now. I need to be safe and calm and let things blow over. Then, and only then, will I consider therapy. Maybe that's not the way "they" like to do it, but that's what works best for me.

Please send prayers my way. I know I just asked, but I need to ask again. I'm scared about what will happen, and I don't want to go to the hospital. I want to stay here for a week or two and then go home (with staff at my house). Why, why, why can't I just get what I need?

Good ol' Boss

2010-10-13T13:09:00.002-04:00

I was super nervous about my job. Mom called my boss to give her a vague "she needs to be hospitalized, probably for about a week" (not that I'll be home in a week, but I can go back to work from Emmaus then). Took her a day and a half to call back, but Boss told mom that I'm a good worker and to take the time I need then just give her a day or two's notice and she'll put me back on the schedule. Mom said she couldn't have been nicer. I hope a week will do it.

I'm sooo nervous to go to Emmaus House. What if I don't fit in? I mean, I know I'll be more independent than a lot of what they're used to. They told Mom that they'll evaluate me to see what program to put me in, and that I might not be recommended to go back to my own house after respite, but rather a supportive apartment with staff. Time will tell. I'm fine with a different house, but I want to keep Elsie with me.

So basically, if you could send some prayers my way that I get to stay close to my kitty, I'd appreciate it. She'll stay with Mom (where she's totally fine and loved and everything) while I'm away. I'll miss her, but I won't worry about her one bit. At least, I'll try not to, because I know that it's completely unnecessary...

Emmaus House

2010-10-12T13:52:00.002-04:00

Well, it's been 10 months. Last time I only made it 7, so this is good. In lieu of heading back to the hospital, I'm going to a respite center for people with MR and ASDs. It should just be for a few weeks. I can go to work from there and everything, although I'm hopefully going to take a week off and get my feet back on the ground. Elsie P will go go Mom's. Leigh will still come to visit before she leaves for California (and she will bring Felicity, the American Girl doll who is going away forever and thus I'll never get her because she's expensive, but I'm just over the moon to hang out with her for a while...).

I will have my cell phone, my regular clothes, access to a computer, my weighted blanket, Tigger, access to my own toiletries (trust me, this is huge, lol)... even my own room.

Will let you know how it's going when I get there!

For Amanda

2010-10-11T11:17:00.006-04:00

Leigh and I making silly faces. Neither of us really knows how to do that, so it comes out even more ridiculous.

The street in town, where the parade came. I forgot I had my camera during the parade, though...

Disclaimer: I hate this picture of myself. But Leigh says I'm "really" smiling, and Chaos (the cat) looks fantastic, so I had to put it up. Chaos is one of the cats in the music store in town. He's 16 now and can't see very well, but I love him. I came in after not seeing him in 7 months and he ran over and let me pick him up and puuuurred and licked my face. Most of the day kind of stunk, but Chaos was good old Chaos :)

Rules to live by

2010-10-09T19:47:00.004-04:00

1. Don't post when you're angry.

2. Friends don't ditch.

3. Friends aren't mean.

4. Causing hurt does not fix hurt.

5. Pick a picker ball (see Jess's post here), not skin.

6. Pretty is as pretty does.

7. You can have more than one best friend.

8. Different, not less.

9. When in doubt, hold Elsie.

10. Leigh's not a jerk; don't treat her like one.