Stuck and chatter

As I’ve said before, I am me and I think I’m perfectly normal.  I don’t know any other self, any other mind or body, and so how could I feel like I’m lacking or unusual?  I can’t.  And I don’t.

But I do spend quite a lot of time lost inside my head.  It hurts, literally hurts, to be pulled out and forced to engage.  Sometimes I can’t and I shut down.  Today, staff was here and I ate my potato and typed and just went away for a while.  Staff knows not to talk to me or anything else when I’m either shoving my face in the cat or typing.  That’s my time, and that’s my signal to them that I need a break.  When I’m ready, I come back again.

Nobody ever asks me what goes on in my head.  They ask what I think, or how I feel, or what I believe, or for my perspective… but that’s different.  That’s what my mind does, my being.  But my head does its own thing altogether.

Two things predominate in my head.

One is the stuck.  I’m always stuck.  I get one thought, and that’s all that exists and that becomes my everything for the time being.  As you may (should?) know by now, Elsie P is the number one subject of the stuck.  I’ve been stuck on my cat for almost 14 years, and guess what?  It’s not going anywhere.  I can get stuck on needing something, wanting something, wanting someone, worrying about something, seeing something, going somewhere… you name it, I can get stuck on it.

There is good and bad to the stuck.  On the one hand, I can be deemed obsessive and maniacal and even inconsiderate.  So, your dad is sick?  Well, I have a cat.  My cat is Elsie Penelope.  She’s nearly 14 and has little white toes and a nose like an eraser…

But the good is that accomplish a lot, most especially what I set out to do.  I have a one-track mind, and if I have a goal, chances are very, very good that I’ll meet that goal.  Like, if I want to write a book… or if I want to be a speaker… or if I want my dog… it’s gonna happen.

There’s another common theme in my brain, though, and that’s the chatter.  My brain just goes, and goes, and goes… and it makes zero sense.  You know how you dream when you’re asleep and it’s senseless?  Well, my brain has auditory dreams 24/7 and they’re ridiculous.  Sometimes I just sit and listen to the chatter… “Wigwam. Z, Z, Z. High school band pants. Pea-coat green…” and so it goes, on and on.  It can be tough to catch, because it’s like looking directly at a star… if you look sideways at the star, it seems very bright, but if you look right at it, it’s not very bright at all.  Well, with the chatter, if I listen directly to it, it gets very quiet and hard to hear.  So I listen for flashes, and I entertain myself.

My revelations (that’s what I call a new realization or synthesis of two concepts that I’ve never joined before) do not usually come from within my mind.  They come from without.  I just… come upon them, and there they are.  I probably get a revelation between one and four times a week, and sometimes that becomes the topic of the stuck for a few days.  Then the chatter, well, who knows what it’s doing.

It can be really, really hard to focus beyond all this stuff!  I tend to fall into my head when people talk to me.  If you talk for more than… I should really time it sometime so I can be accurate… oh, say thirty seconds?… I’m somewhere else.  The chatter has begun again (I can turn it off long enough to listen to a few sentences), and I’m back to the stuck.  And then add in trying to sort through external sensory input… and really, I’m not really taking much in anymore.

The good thing is that the stuck and the chatter and the sensory issues weren’t quite as bad when I was younger, so I was able to learn.  I know for a fact I couldn’t handle a classroom environement anymore.  I wouldn’t take in anything.  I’m lucky I remember what class I’m taking in bible study… but I honestly don’t know anything much that he says.

I’m not saying that every autistic person has the same head issues I do!  Everyone is different, to be sure.  I just thought I’d explain mine (believe you me that this was NOT easy to figure all this stuff out; I’ve been working on it for months to be able to type this about it).

I don’t like to leave on a negative (i.e., “Here’s all the junk going on in my brain and woe am I for it.”)  No, no.  That won’t do.  And so, I give you, “How you can interact with me in light of this information.”  Cause, see, I try really, really hard to be polite, so I’m not likely to stop you and ask you to change your style.  I feel guilty.  I spend way more time than I let on… well, confused.

1. Slow down.

2. Less words please.

3. No soliloquies.  Give me a sentence or two, and stop.  Let me take it in.  Check if I heard you.  Then continue.  What happens if you give me more is one of two things: either I tune you out, or I latch on to one word or small idea within your speech and respond only to that, because I can’t process all of it.

4. I listen to the loudest thing, which includes the chatter in my head.  I cannot block out something louder than you and listen to you anyway.  I simply can’t hear you.  If it’s too loud, we need to go somewhere else, or we need to switch modalities.

5. If I repeat what you say more than once or twice, or if I ask you to repeat it more than that, please write it down for me.  Text it to me.  Email it to me.  Type it up on my iPod for me.  It’ll sink right in.

6. If I’m not really responding and you’re frustrated (Dude, come on… I just told you my whole life story and all you have is “oh”?), ask me if I can type for you.  You’ll get a lot more.

I hope I’m not asking too much.  I really hope.  I’m trying to make for an overall positive communication experience for both of us, keeping everything in mind that’s making it challenging.

 

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Blue glasses

I see the world through blue glasses.

Blue for autistic,

Blue for Christian,

Blue for blogger,

Blue for Lydia.

I can’t possibly see through pink glasses.

And you can’t see them through blue.

If I put on pink glasses,

My world would fall apart.

If you tried on my blue glasses,

You wouldn’t be able to see very well.

So you wear your glasses,

And I’ll wear mine,

And all can still be well.

Rough night for Elsie P

I woke up at 12:26 AM to Elsie throwing up.  She sounds like she’s throwing up most nights, and usually nothing comes up, so I wasn’t worried.  Back to sleep.

3:30 AM.  Cat wants food.  Realized pump site fell out.  Suddenly, it hit me.  Elsie P’s been grooming a lot.  And scratching.  I picked her up aaaaand… fleas.

So the guy next door who is, uh, how to say it nicely?, he’s… just not all there… well, he puts his cat out the window (we’re ground level) on a leash.  And I keep saying we’d get fleas.  People kept saying oh, no, no, no.  Well, guess what?

Somewhere in the process of frantically walking around and fussing over Elsie, I saw the throw up.  It looked like a human threw up.  Poor baby.  And she’s all itchy.

I pulled all the bedding, including my own, all the throw rugs, and bagged them up.  I vacuumed everything to death (yes, at 4 AM), including the couch.  There is flea dirt EVERYWHERE.  Elsie’s boxes and favorite blankets were covered.  I keep finding it on me, too.  Ew.

Anyway, mostly I’m worried about Elsie being uncomfortable.  And she’s going to need a bath, and you know how she feels about baths, right?  Human as she may be, she is, after all, a cat who hates water.

I woke Mom up at 2 AM her time.  We’re going to have to call the vet (he might want to put her on flea stuff, which is expensive, I think), go to the Petsmart and get a flea comb and flea shampoo, take Elsie and I and all our stuff to Mom’s, have one of the guys (Mom’s guys at work) come and exterminate the place, and wait for it to dry till we can come back.  Now, I’ll be okay at Mom’s, but Elsie hasn’t been there in almost a year.

Would you mind a prayer for Elsie P?  Poor old girl can’t get a break.

I am normal, just ask me

For 21 years, I truly thought that I was just like everyone else.  So many people on the spectrum who aren’t diagnosed as kids spend their lives wondering why they’re different.  Not me.  I never realized that other people didn’t lose speech, couldn’t communicate half of what goes through their minds, or had meltdowns all the time.

And, truth be told, I still feel just like everyone else.  As far as I know, I don’t look different.  I don’t think I sound different.  I’m not aware that I think differently.  I like perfectly typical things like swimming, Reese’s Peanut Butter Cups, clothes and shoes, and animals.  So really, it’s a struggle for me to remember that I’m different.

But how different am I really?  I know we’ve been through this, so I won’t repeat myself at great length.  When it comes down to it, I love my friends and family, I want to make a place for myself in this world, and I want to change things I find wrong.  I want love, acceptance, and companionship.

Most adults on the spectrum feel a bit (or a huge) of an “aha!” moment upon reading about autism for the first time.  I felt nothing, other than maybe a “that’s nice.”  I had so little sense of myself and who I was that I didn’t even recognize myself in a description of me!  Leigh talked me through it and helped me to see… and now, I guess I do see that I fit the criteria…

But I still feel normal.

On identity crises and small group

Mom’s in Vegas for a week then visiting family in California.  This leaves Lydia and Elsie Momless and rather disgruntled.  Momday is Saturday… only today it was Friendday and Auntday.  Friend and Aunt are lovely and I love them, but they’re not Mom, and I’m on the verge of melting over the whole thing.

I ran a small group at church for young women (14-25) with ASD today.  One of the girls made it very clear that she is not into the whole religion thing, nor was she a fan of crafts (I’d planned a craft) or for that matter, people.  I told her, listen, I’m not here to make you be something or do something you don’t want to be or do.  Yes, we’re going to talk about God some, but you can choose to paricipate or not as you wish.  You can do the crafts or do something else.  You can text or listen to you iPod.  I don’t care.  And, seemingly magically, she perked up.  She joined in the conversation.  She did the activities.  She loved Applies to Apples (who doesn’t?).  Next time, I told her we could play with the Wii or watch college football, not to mention more Apples to Apples.

To be clear, I do have a plan in my mind.  I have a series of goals, sort of… and the first one to accomplish would be to show these girls that all people don’t royally suck.  And a step beyond that, that all Christians don’t royally suck.  I want to help them develop their own identities and be able to verbalize who they are.  I do not want to force religion on them but rather build from the ground up with relationships and community and safety.  I want to build the right environment, have some discussion, and hopefully get them thinking.  If, via this group, they can learn that church is an okay place and that some Christians are decent people, if we can open those doors so that someday they can make these important faith-based decisions for themselves… then that is my goal.

For some of the girls in the group, it seems that autism is our only identify.  Others won’t let it into their identity in any way.  They build up their other interests and abilities in order to push out the autism.

We all need balance, don’t we?

My friend emailed me last night saying that she doesn’t know who she is apart from teaching.  When she’s not teaching, she feels aimless.  You, reading my blog, might think that I don’t know who I am apart from autism.  I find that many of us focus ourselves on one aspect and say that that is who we are.

I have a shirt that I wear to autism events… it says I’m So Much More Than Autism and has a bunch of adjectives around the big words.  I wish everyone had a shirt like this.  My friend J’s could say I’m So Much More Than Teaching and include words like helpful, passionate, and curious.

How about you?  What would your shirt say?

I’m So Much More Than A Mom.  Try smart, quick-witted, and easy-going.

I’m So Much More Than Cancer.  Try joyful, understanding, and a good listener.

I’m So Much More Than This Wheelchair.  Try an actress, a teacher, a friend.

I’m So Much More Than An Engineer.  Try a football lover, a father, a deacon.

We’re all multifacted.  When we focus on one aspect of ourselves to the exclusion of all others, we do ourselves and our Creator a disservice.  We were created to be ourselves- all of ourselves- and not anybody else.  Don’t let anyone tell you, most especially this world of ours, what or how you should be.

Be who you are.

On terminology and why it matters

Believe you me.  I’m one of the first people to say that, at least for me, autism is a disability.

But if you ask me, “What’s that disease called that you have?”  Sorry, but- wait, no, I’m not sorry- my feathers will get ruffled.

And then others will tell you that autism isn’t either of the above, that it’s just a difference.

Why does it matter?  Because the public’s perspective on autism is so, so skewed.  I get it all the time.  “You can’t have autism because you’re a girl.”  “I thought people with autism were r-word.”  “Autistic people look weird.”  “People with autism don’t talk.”

Honestly, as someone said to me tonight, sometimes it would be better if the public knew nothing about autism than what they do know.

As always, what follows is only my perspective; I don’t speak for anyone else.  Got it?

As society stands, autism is a disability.  If a person argues with you that they’re just “a little quirky” and not disabled then they, in fact, do not have autism as a diagnosis requires a “clinically significant impairment” in daily life.

But note carefully… I said, as society stands.  If we lived in a society where people typed instead of spoke, and you couldn’t type, then who would be disabled?  In our society, where people want to live independently, go “out” for fun, and drive cars… why, yes, I am disabled.  But what if we lived a few hundred years ago, where people lived with their families until they got married (aka, never for me), listened to music and sat around the campfire, and rode horses… see where this takes us?

That’s called a social model of disability, as opposed to a medical model.  I find that it’s good to take certain principles from it, but some ways it isn’t practical.  After all, facts are facts, and the facts are that this is October 2011 and that I’m here in Pittsburgh in my apartment with Elsie P.  The facts are that Mom is going out of town for the next two weeks.  The facts are that driving is really, really up in the air for me right now, even though I have a car while Mom’s away.  Me, I like to deal with facts, and not hypotheticals, so the facts are that I do have a disability.  I’m never going to create autistic utopia, so here we are.  Rather than chasing down a cure, my personal choice is to work through the areas of my life that impede my daily getting-by, and build on my strengths.  This does not mean that I will try to normalize myself just to appear normal.  I am Lydia, and so I will be the best Lydia I can be.

Now, regarding the disease facet…

I’ve heard some terrible things these last few months.  One parent mentioned a specific autism treatment, and when informed that some kids have died from that treatment, the parent said, “At least he won’t be autistic.”  Others have said they wish their children hadn’t been born, or that everyone has the right to a typical child.

This breaks my heart.  Part of me wants to say, “Your autistic child doesn’t deserve you.”

Let’s just get this straight.  I’m not diseased.  Much like many in the Deaf community oppose cochlear implants in babies, before they can make the decision, some with autism oppose the idea of curing a little one with autism.  And you know… I’m glad I am the way I am, difficulties and all.  Sure, I would wish for an earlier diagnosis and earlier awareness… but a cure for autism would also cure Lydia of Lydianess… and gosh, I don’t want that.

Busy-ness and an interview

A few weeks ago, I did an interview with the CVS Caremark All Kids Can program.  Check it out here.

I have my writing eyes on, looking for something interesting or poignant about which to blog… but sometimes writing eyes get clouded with busy-ness.

Mom’s away for two weeks as of Friday.  Am. Not. Happy.  Understand that Mom needs to go on vacation, but… I’d rather her be here with me!

Making two elephants, five hats, couple sets of gloves, and a few bracelets for people’s Christmas.  Oh, and a secret project that I can’t publicize.  So when I’m not typing, I’m crafting.

Preparing for speaking in Ohio in a few weeks plus working on some things to see about speaking in NYC.

Writing a new presentation (check out the tab on my blog to see more about that).

Leading new small group on Saturday for young women on the spectrum at church.  Should be interesting.

Appointments, of course.

And right now, I have to go get ready because in ten minutes Mom will be here to take me to the library to sell/sign books for a couple of hours for a Local Author’s Night.

Hope to see you there!