On exploding

I keep starting this post, erasing, and restarting.  Ugh.  I’m not sure what to focus on or how to make it make sense to anyone other than me. 

Something my mom noticed very early about me is that I kind of, um, don’t much care about other people.  Honestly, I treat them a little like furniture, or just a means to my own end.  Now, there are a few individuals to whom this rule does not apply for the most part (not to say I don’t slip up and it doesn’t sometimes).

This is also not to say that I’m not sometimes good at faking it.  If you were sick, I might ask you if you’re feeling better now, but really? There’s no feeling behind it.  I might check that we’re not walking too much for your back, but I’m more worried that I will have to stop walking than that you’re in pain. 

Conversations with me basically have to be about me or my cat or dog for me to even try to participate.  Your work?  Your friends?  Your anything?  I try hard to pay attention, but I just can’t.  Selfish?  Maybe.  Can I help it?  Honestly?  I don’t think so.  Feigning interest just isn’t an option for me, or I’d try it.   I don’t feign what I don’t really think or feel at the time.  Not capable.

The other day some lady came up to us in the grocery store, staff and I, and started telling me about her cats (but really, I think, it was more about her).  I said something about Elsie and she went back to herself and her cats… and me?… I walked away.  Just left. 

I think all of this stems from the fact that I simply cannot conceive that anyone else is a fully sentient human being, as I am.  Now, I warn you that some guy on WrongPlanet told me that the following is illogical, but it’s true for me and I’d thought it was true for everyone: I need physical space to think.  If you’re in the same room as me, you’re infringing on my thinking space and I don’t like it.  In light of this truth and the fact that I had thought it applied to everyone, it makes sense that I questioned how the world does not explode (my commonly-used-word for… short circuiting, I guess?) due to the presence of 6.whatever billion sentient human beings. 

You see, if everyone has a brain like mine that thinks as busily and complexly as my own, and if thinking requires space, as it does for me, then how can so many people coexist without some kind of major problem? 

As I type that, I guess I realize that there ARE major problems.  But, as not-so-nice-guy on WP pointed out, it’s not because people need space to think.

Once again, that’s just me, apparently.

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Like a glove

I periodically but consistently fuss about not knowing anyone “like me” in this… country, really.  I’m in a funny spot, you see; I don’t fit in with typical people my age, but I also don’t fit in with people with disabilities for the most part.  Remember when I tried the church service for adults with disabilities at my church, and it was aimed at maybe a 2-year-old’s level and they talked to me like I was a preschooler?  I didn’t like that one bit.  I was really uncomfortable.

So there’s a place up the road a ways called The Woodlands Foundation, and it has camps and retreats and stuff for people with disabilities of all kinds.  My mom called the camp director and told her about me and she said I’d be a perfect fit.  Then I called to get details, and the girl said I’m “too high functioning” for their camp (my question was how does she know my functioning level based on a 5-minute phone conversation?).  She agreed that I could come (at no cost!) for a day and hang out with the campers and get a taste of camp life to see if I want to stay longer in the future… she tried to convince me to come as staff, but I told her I wasn’t comfortable and didn’t think that was a good idea.

I didn’t have high hopes for going today.  Anytime I’ve been at events for people with disabilities, it’s been “us” and “them”… or, “the helpers” and “the helpees.”  And to be honest, I kind of expected it to be like the church thing I went to a couple years ago. 

It.  was.  awesome.   There were no boundary lines, no us and them, none of that.  There were people, people of every kind of skin color, shape, size, condition, ability, intelligence.  To be honest, I couldn’t always tell who was counselor and who was camper.  Everyone helped each other out.  Everyone had fun on his or her own terms.  There were even girls like me (I mean, I don’t know if they had ASD, but girls who generally functioned like I do)!  There were even a few who were higher functioning than I am (as in, you would never know they have a disability even if you’re looking for it).  Camp fit me like a glove.

First we did archery, and the guy said I was pretty good!  I hit the target maybe a fourth of the time.  During archery, the girls were all talking about… boys, or music, or something I couldn’t quite grasp… and I sat there and talked just to staff.  But the girls were all really nice to me.  One, especially, I exchanged information with and would like to hang out with her.  (My mom’s first question was “what’s her disability?” and the answer is, I have no idea and don’t think it matters that much, because I like her).

Then we did arts and crafts, my favorite!  I made some projects for Mom.  One of them is fireworks out of paint and blowing through a straw, and Mom looooves fireworks, so I know she’ll like it. 

Then we had lunch.  I talked to the cook and she said she can handle any dietary restriction I throw at her.  When I said “gluten, casein, soy-free, vegetarian, low sugar?” her eyes got big, but she said we’d work it out and that I could even bring in my own special peanut butter cookies (they are only peanut butter, splenda, vanilla, and an egg, so, pure protein). 

After lunch we swam for an hour.  There were like 50 people in the pool!  It was kind of loud and I got a little antsy so I got out early and went and got dressed and stuff.  Then we hung out and waited for my new friend to get back so I could get her information.

Even the counselors were fantastic.  They treat everybody the same.  The laugh with us, swim with us, eat with us.  They don’t treat you like you’re somehow “less than.” 

There are weekend retreats every month of the year, and it’s only $100 to go!  Mom says I totally can.  I can’t wait!

Oh!  I will meet Lexi Mae on July 9th.  ELEVEN DAYS!

Must not be an elephant

“I meant what I said and I said what I meant.  An elephant’s faithful, one hundred percent.”

Not to withhold credit where credit is due, but if anyone can tell me what book the above quote is from, well… well then you win!  Yay for you!  It’s always been a favorite book of mine, and I’ve recently read it to Heather’s boys, and they loved it too… especially because I did voices, I think. 

Anyway.  Me?  Clearly not an elephant. 

In discussing the topics addressed in previous recent posts with Mom, we came to a conclusion.  Now maybe this is about to state the obvious (because, well, duh, we all know why) but what goes on in my head and what comes out of my mouth can be really, really different from each other.

I give you pertinent examples for your consideration:

I think: “I cannot drive the car downtown because it is Mom’s car and Mom says I am not allowed.”

I say, in response to any number of questions: “But I can’t.  No, I really can’t.  No, I CAN’T!  I can’t do it!  No! NO! It’s not safe! (See, the reason Mom says no is because it’s not safe for me to drive downtown, right?  But I skip that part and jump to the “it’s not safe”).  I’m done talking!

Clearly, I had a very good reason why I could not drive downtown, didn’t I?  But I couldn’t accurately communicate that reason, resulting in my BSS thinking (I think, because that whole mindreading thing that you “typical” people do honestly kind of goes over my head!) that I was just being anxious about driving and that THAT was the problem, when it only indirectly had to do with that. 

I think: I’m feeling really anxious/confused/frustrated/insert emotion here because insert reason here… or… I want to know what kind of day you’re having, but I’m afraid you’ll give me too many emotion-words to process at once… or… I miss you and want to be with you soon.

I say: I have a cat. 

I think, in response to being asked if I would like the radio on in the car: No, I really don’t feel like doing any more listening tonight… but if we don’t turn the radio on, you’ll talk at me incessantly, and the familiar music of KLOVE is preferable to the unfamiliar words you’ll throw at me, so yes, I’d like the radio, please.

I say: Nothankyou.

Why? Why don’t I say yes, when I mean yes?  Because “yes, please” is not ingrained in me, and nothankyou is very much so.  So, I say nothankyou to all kinds of things when what I really mean is “give me a second while I sort my speech out and I’ll get back to you, k?”

How do you unlearn 23 years of “nothankyou” and relearn a new stock phrase so fast?  I learned early on (though, based on childhood videos, definitely not by age 3!) that questions require an answer.  So, I answer.  Problem is, my mouth goes off without my brain processing the question yet, let alone processing my response to it!   Because, if you remember from older posts, I don’t exactly think in your language; therefore, there’s a whole translation process that needs to occur, and this can be slow.

Another thing ingrained in me is to feign understanding.  I wish I could show you how good I am at faking it.  See, if you met me, you wouldn’t believe- heck, my own family wouldn’t believe- how much I actually don’t understand of what goes on around me.  You have to know to look for it, such as when you ask me “Can you… for me please?” and I say, as I should, “Yes,” and then don’t actually do it because I didn’t understand what you’ve asked of me.  I’d say I get 75% in a conversation between me and one other person, 50% with 2 other people, and very little beyond that.  The problem is both my attention (because I can’t listen long enough to understand the reciprocity of the conversation) and my processing (the actual words fly around over my head, or so it feels).

Oooh! You want an analogy?  Well, you know how you can read a paragraph and have no idea what you’ve just read and have to go back and reread it six times (this has not happened to me but I’ve heard about it many times).  Well, that happens to me with conversations.  I hear it, at least, my ears are present, but I don’t catch much.  Only with conversations, you don’t get to “reread,” and they keep moving on whether you’re ready or not.

A really big problem in this whole situation is something I haven’t mentioned yet.  Unfortunately, perhaps for me at least, what DOES come out of my mouth can make, at the surface anyway, some sense, so you THINK I know what I’m talking about.  But really, I don’t, and this makes messes.  If you’re around me enough (which is a lot… as in, staff has begun to notice it, but even my sister hasn’t said anything so far… haven’t lived with her since I was 11), you’ll start to realize that I contradict myself and don’t always convey accurate information, even when I think I do.  But, you have to either have been around for the event I’m describing, check with a third-party source, or hear me describe the event again after I’ve forgotten having described it the first time, to notice that I’m inaccurate or confused.  If you just listen to me, I sound, well… like…

I mean what I say and I say what I mean.  Just like that elephant.

Only, I DO mean it, and I DO say it, just… oi vey.  Have I got anyone else’s brain twisted up now?

Facepalm

I wonder how much of the time I catch myself when I make social blunders.  I mean, I feel like I make them constantly, and I think usually I know it as soon as I’ve said whatever it is. 

Scene: VBS.  Child is sitting across the table from me with a lump of clay, with all the colors mixed up together.  Child’s mom is standing beside me, and adult in charge is behind her.
Adult in charge: We just don’t want them to get a bunch of colors at once so they don’t mush it all up together.
Me: Like he did?
Child’s mom: (scowls at me)

I knew immediately that I should not have pointed out a child’s shortcomings in front of his parent, when I don’t know the child OR the parent.  The mom wasn’t happy.  Oops.

I called Mom this morning, as I do every morning, to tell her… something. 
Me: Hi my mom.
Mom: Good morning my Lydia.  Is there something you need to tell me?
Me: I forget.
Mom: Okay.  Well you call me back when you remember.
Me: Kitty cat.
Mom: What’s your kitty cat doing?
Me: I have a cat.
Mom: Go pet your cat.  I have to get ready for work.

I got off the phone and knew immediately what I wanted from her, but while I was talking, my words wouldn’t… cooperate, and all I got was cats. 

I’m stuck on a question, too.  This happens.  I have a question and I ask it of everyone for a while, until I go onto something else.  Right now it’s, “What’s your favorite part of a cat?”  Can’t say I much remember anyone’s answer… but I love thinking about all the little cat parts when they tell me their favorites.  And then I laugh.  I guess laughing’s good, but what I really want is conversation… I just don’t very well know how to have it.

It’s frustrating not to be able to do what your brain knows how to do…

Poke

The, “Lydia, you need to post now,” is poking at me.  Poke, poke, poke.  Feel it? I hate that.

It’s not that I don’t have anything going on.  I mean, I’m helping out at church summer camp all week.  There are all sorts of staff issues that I don’t feel like getting into.  Oh, and I won’t have a computer for up to a month, as it needs to be repaired before I hurt it, or myself, or both of us.  Can’t type a whole sentence without the cursor jumping, opening different windows, or deleted your text never to be found again.  It’s got to stop.  One more thing: I need a wisdom tooth out, and it’s pretty sore at this point, but they can’t do it for a month or so.  Ugh.

Anyway, the big thing on my mind is some rules.  What kinds of rules, you ask? Well…

Firstly, only my doctor and my therapist get to label me.  Nobody else.  This includes functioning labels (a kind-of-maybe-not-entirely-convinced-they’re-necessary evil, if you ask me).  You don’t get to decide that I must be ultra-HF just because I can type or speak (and the speaking comes and goes).  You don’t get to decide that I’m not REALLY autistic.  You don’t get to decide that I “should” be able to do XYZ, just because you think I can.  Sorry, folks.  Not for you to decide.  Chances are if you’re reading this, you already know that… but some people, most people who work with me DON’T know that.  Too bad they can’t read my blog (and by “can’t” I mean I won’t allow them to, because this is MY space to express MY thoughts about whatever I choose, and I don’t need them invading my safe space).

Secondly, it’s not a compliment to tell me that I could be just like everybody else if I wanted to be, and that the only reason I’m different is because I choose to be.  I fought like hell to be “normal,” and the fact is, I can’t be.  I simply can’t.  Try as I might have, I could not blend in, and I think that sometimes the harder I tried, the more I stood out.  I have found MY happy medium, and I’m happy… until people start telling me I’m not living up to my potential, that is.  Then I’m not happy; in fact, I feel rather invalidated.  (Hey staff, how’s THAT for a feelings word?  To bad words like that don’t come out of my mouth… I wish I knew why they won’t.)

Oh, there’s goes my attention span.  Vent over, I guess.  Off to write a different post now.

Things I say

Top I don’t know how many I’ll come up with things I say, not in order… my everyday language, most especially when I’m at home, leaving home, or coming home, is peppered with these phrases, probably seemingly randomly (that’s a lot of adverbs!).  They all have the exact same intonation every time I say them.  For the most part, they come out when I don’t need them and don’t come out when they’re appropriate, though sometimes they do make perfect sense.  They’re all either echolalia (repeating others’ words), palilalia (repeating my own words), or rote-learned phrases.

1. Hi, Els.

2. Elsie Penelope!

3. Kitty cat!

4. Lexi Mae!

5. Hi (this slips out randomly in conversation without my meaning it to)

6. Nothankyou! (said emphatically and as one word)

7. Hi my mom

8. Please (I say it to mean yes, so I say it a lot, but I also say it when it’s not necessary and don’t say it when it is… oi vey)

9. Oi vey!

10. Youwouldn’tdothatplease! (AKA, stop it!)… usually followed by..

11. YOU HURT MY EARS! or THAT HURTS MY EARS! or MY EARS HURT! or incoherent whining due to ears hurting

SSI: Results!

I was sooo nervous!  Shaking and everything.

I was rocking the whole time, had to be reminded nearly constantly to answer verbally and not “mm-hmm” or a nod, had to be told to speak up all the time… I was afraid someone was going to yell but they were patient.

Attorney: Any friends in college?
Lydia: One.
A: What did you do with that friend?
L: Studied mostly.
A: And for fun?
L: Pet the cats at the music store.
A: Any extracurriculars?
L: No.
A: Any sorority?
L: No.
A: Any dates?
L: No. (NO FREAKING WAY, but I didn’t go there)
Judge: How about dances?
L: No.  Too loud and too many people.
A: So what did you do?
L: Stayed in my room.

Somewhere around that point, the judge stopped us and said she didn’t need to hear more.

The judge didn’t even hear all the testimony, my mom never even came in, and she made her decision.

She did ask the vocational specialist one question, which was as follows: “This individual would need up to 5 reminders to follow any given directions, would need to be isolated from the public and coworkers, would need a one-on-one job coach, and would need 3 scheduled breaks in addition to 2-3 additional unscheduled breaks.  Is there any work this individual could perform in our country or our region?”

“No, your honor.”

Oh my, that sounds extreme, doesn’t it?  Really, nothing?  Had she made a suggestion, you know me, I would’ve been off to research doing that job… but nothing?

Nothing.

We thanked her and left.

And my attorney explained that it was a success, because if they don’t hear all the testimony or don’t ask the vocational specialist a bunch of questions, then it’s a mistrial and they have to repeat it or we can appeal. 

He also thanked me for giving him such a good autism-education, because he’s never worked with someone with ASD before. 

So, it’s a go!

Say it with me? LEXI MAE!