A tiny peek

I know I’ve been away for months.  And I have no idea whether I’ll be back with another post in two days, two weeks, or two more months, so as usual, please bear with me.  At some point I might open the windows on what’s been going on and let you stick your head in and take a look around at what my life is these days, but for today, you’re just getting the tiniest little peek.

As long as I have the word autism attached to my name, there are certain preconceptions and connotations that that word carries with it.  If you hear that I’m autistic, you’ll probably assume that I’m not the best communicator.  And you might assume that I can be rigid.   You might also guess that I don’t do well with other people, with friendships.

That’s where I’m about to prove you wrong.

In October of 2011, my evaluation stated that I had absolutely no insight into normal human relationships.  That’s a blow for someone like me, who happens to love her friends and family fiercely, intensely, and completely.  It hurts to hear that.

I’ve known in the past several months or so that I’ve made a lot of progress in that area thanks to some very patient friends, but I realized just how much progress I’d made when I discovered that I’m doing better than a lot of people my age…

I was on Facebook a few weeks ago when I saw a meme posted by an old friend, my age, that said, “Real friendships are based on a solid foundation of alcohol, sarcasm, inappropriateness, and shenanigans.”

She might’ve just been joking around, but I know that for some people that’s the truth.  And I thought of my friends, and what our friendships are based on… things like shared worship time learning to say I love you in person.  Our “shenanigans” are going to the grocery store and stopping for a bite to eat (oh, once upon a time when I still ate).  I can’t say any of my friends are big on sarcasm, and neither am I.

I have a handful of autistic friends via the internet that have proved tried and true through my recent ordeals.  Some of them speak, and several of them don’t, or prefer to type.  Some of them need fairly intensive supports.  They have varying levels of ability, disability, maturity, and so forth.  These girls have taught me about true friendship.  Why must it be such an unlikely source, a person with autism?  When are we going to realize that people with autism make some of the most loyal friends?

Want to know what real friendship is?

Ask your local autistic person.  Better yet, let her show you!

Revisited

Well, it’s 6 AM and I’m wide awake.  My nerves are getting to me, interrupting my sleep.  As an aside, for whatever reason, I can’t really seen the screen even with my glasses on… and for another, there’s a Lucy Goosey up here “helping” me too.  Thus, typos are to come, I am sure.

Some months ago, back when I was a regular blogger and all, and I think it was around Christmastime, I wrote a post explaining that sometimes, all we (autistics) is to get a break from what we “should” be and to be who we really are.  And so, in the piles of Christmas and birthday presents, I think that the child should certainly receive therapeutic toys, but also receive what he wants.  This might mean that you’e 15-year-old grandson get Thomas the Tank Engine toys.  It might be that your young adult daughter wants a specific doll.  If you ask me, that’s perfectly acceptable.

I spent last week in the hospital trying to sort through some serious GI issues and of course we are no closer to figuring things out than they were when I went in.  I have an appointment with gastroparesis specialist on Monday.  My PCP wanted me back in the hospital yesterday but I convinced her to let me try to stay hydrated at home.  The scary part is my blood sugars, of course.  With the GP, they swing wildly and are downright impossible to control.

Anyway, as I laid in the hospital and paced the halls with my IV pole, friends stopped in almost everyday.  Each time, the friend would ask what she could bring, and each time, I said, “I just want to see you!”  Yeah, right.  Silly friends insist on gifts.

And I was so excited at the realization of how well my friends know me.  I have a giant cat stuffed animal, and a giant black lab puppy one, cat magazines, cat bracelet, even a little rose bush.  Yes, I’m 24 and probably “shouldn’t” love stuffed animals like I do.  I say, who cares?

Speaking of 24, I may be getting old, here. I still can’t see the screen.

 

PS- Happy 500th blog post to me

Growing up as me

I’ve never been one to carry a purse.  And at this point, I’m kind of known for my backpack.  It’s a full-size backpack, but it’s really pretty.  And you know, I’ve been happy with my backpack.  It fits the nineteen thousand things I like to keep with me, Diet Mtn Dew and all, and it doesn’t slide down and clunk people when I move my arm like a purse tends to do.  So for years, ten years?, I’ve been content with my backpack… until I realized something.

Everyone else carries a purse.

I carry a backpack.

Maybe I want to carry a purse too?

Now hold on a second.  Don’t for one second think I want to assimilate into society to the point that I’m indistinguishable from everyone else.  No, no.  That’s not me.  To some degree, I’m always going to stand out, whether it’s my extreme shyness, my health issues, or my soon-to-be-service-dog.  My communication style is unique, and while I’m not socially inappropriate, I definitely have my own style there, too.  I don’t know if I’d maintain a full autism diagnosis at this point, but I’ve got the quirky thing down pat.  I’m okay with that.

But there are certain ways that I don’t really want to stand out.  My “thing” right now is that, as I’ve grown up so much mentally in recent months, I want to look my age, too.  I’m 24, but I don’t really look like I’m in my 20s.  My backpack, Disney t-shirts and such don’t really help this situation.  I constantly get asked what grade I’m in.

And so, I found a purse.  A nice huge shoulder bag, the brightest coral I’ve ever seen.  It’s all Lydia.  It stands out.  But it stands out in a way I like.

My mom took me shopping for, shall we say, grown up clothes.  Today at church (where I subsequently had a panic attack and bolted from, but that’s another story), I was told that my shirt was pretty… rather than awww, how cute, Mickey Mouse.  My clothes are a little unique.  They’re me.  In a good way.

Next, I’m after a hair dryer.  I go out with wet hair all the time, but I think it adds to making me look younger, so I’m going to dry my hair before I leave in the morning… most days.

I find that as I make these changes, I realize that I’m even more comfortable with myself than I ever was before.  I feel like me.  Quirky, yes.  Stand out?  Maybe so.  But in a way I like.

Just don’t expect me to wear make up everyday.  That’s pushing it!

Two years

It’s been a while, hasn’t it?  I have to wonder if I’ve forgotten how to write.  My fingers feel pretty at home on the keys.  I’ve been here, living life in its ups and downs.  I had some personal issues that turned into some health issues.  All is not well, but it’s certainly better than it was.

I know you’re probably expecting an Autism Awareness/Acceptance Day post.  Would certainly be appropriate.  But see, with the political battle between the two big autism organizations, I…. I feel stuck.  Ever the people pleaser, I fear, well, to piss people off, on either side.  I have issues with both organizations’ viewpoints.  Neither is perfect.  Where I fall tends to depend on the day.  And so, for today, I’m not doing much for Autism Awareness/Acceptance day.  I’m going to be me, always open to questions and inquiries.  I’m going to try to build people up, like I always do.  I AM wearing a small puzzle piece pin.  I do not take issue with the puzzle pieces.  I like to say that every person with autism is like another piece to a beautiful puzzle, one that needs every piece to display its true beauty.

So today’s ramblings are only loosely tied into autism awareness/acceptance.  I mean, I’ve done some awareness and educational work both in groups and one-on-one at my church, and without that, I’m not sure I’d have the environment I do… but I’m getting ahead of myself.

So, I came to my church two and a half years ago in November of 2009.  I had no friends except Leigh, and certainly none around here.  I’d go with my mom and panic and have to leave the room time and again.  Then my mom had to follow me, or I’d panic more.  I couldn’t even run to the bathroom without her.  I was afraid of the pastor hugging me, I was afraid of the music, I was afraid of… everything!

Fast forward to yesterday.  I met up with one of my best friends at the church for the 9:15 services. My mom was at home.  I go to bible study every week without her and without staff, too.  I always meet H who is amazing at helping me to stay calm and is always a step ahead of me.  So, no, I can’t just show up at church and sit through a service, but I can go with a friend… and if she’s not available, I think I’d manage with a different close friend.

I didn’t get up once during the service.  I was totally fine.  After it was over, I went out into the crazy crowds (hey, so, about two years ago I showed up at a Sunday service, saw the crowds, and turned around and left!) and found another friend and we chatted for quite a while.  Yes, I can chat, in the midst of chaos.  I have to trust the person I’m with to be able to handle me if I get upset, but I can do it.

I got some tea (I don’t like to eat or drink when I’m stressed), so I couldn’t have been too upset at the crowds.  I hugged my pastor happily.  I hugged my friends.

I’m leading a small group at church for young women with ASD, and that’s going great.  Me?  Leading a group?!

It’s such an amazing difference from two and a half years ago.  I can’t believe how much I’ve changed.  I have a ways to go… I still can’t handle church without someone kind of one-on-one with me, but at least it doesn’t always have to be my mom.   And, even so, my friends aren’t going anywhere so I know I can rely on them if I need them.

Six months ago I had an evaluation that said that I had “no insight into normal relationships.”  Hmph.  Ask my friends, and they’ll tell you I most certainly do.  It takes a lot of talking through every little thing to learn what they’re thinking and feeling, but I most certainly have compassion and empathy and I can most certainly help someone if they’re hurt, if I’m comfortable with them.  I do tend to freeze with less familiar people, but I think that might be normal!

I’m not saying I’m not autistic anymore.  I am.  But I’m so much more than autism.  I ran into a lady from church, someone I’d sat next to once, at a service dog fundraiser, and she asked who Lexie was for.  I told her she was for me, and she was confounded.  But… why do you need her?  Well, I have autism.  She couldn’t believe it.  But you’re so independent!  I explained some of what we have in place for me to make it through bible study, where she sees me, and she was blown away.  I was just happy it’s not blatantly obvious.

I think, as I grow and change, I think of myself less as autistic and more as…. Lydia.  Just Lydia.

I never did like to be put in a box.

The long-awaited book!

 

Some eons ago, I mentioned that I was working on a children’s book that would help parents introduce their children to the idea of being autistic.

I give you A Piece of the Puzzle, written by myself and illustrated by Lars Askaner of Sweden.

It’s our hope that this book fills a need within the autism community by providing an accessible bridge for connection between parents and children.

Oh, and Temple Grandin says that “this book will help young children accept having autism and encourage them to develop their special abilities.”  Which is, of course, pretty cool in itself.

I hope you enjoy A Piece of the Puzzle!

 

Thoughts on processing speed

I told you that I’d come back and give you the other puzzle piece, didn’t I?  And it’s taken me a few days, I know.  I’ve been trying to solidify a third point or example in what I’m about to say… but my brain is stuck (oh, the stuck– that’s another subject for another post), and I can only thing of two.  I hope you don’t mind.

At least in terms of autism symptoms, I’ve been on quite an upswing recently.  Whereas I had been regressing for some time, losing skills and myself, somewhere along the way the switch flipped and I started to regain both.  Yes, I still stare at the floor half the time when I talk, and no, I’m no conversational genius.  Still awkward and quiet, too, as far as I know.  But those aren’t things that bother me to any great extent.  The meltdowns and self-injury and inability to communicate… that’s the stuff to be avoided, and I’m happy to say those areas are much improved as of late.

So anyway, another little quirk that hasn’t caught up with the rest of me is my processing speed.  I have seven ways to Sunday to cover up the fact that I often don’t know what’s going on around me… but the fact is, I often don’t.  Whether it’s conversation, motion and visual processing, or touch, it takes me a minute to know what’s happening, and often, by the time I’ve caught A, the rest of the world is already at G.

One way that processing speed affects me is with greetings and automatic responses.  If someone comes up to you and says happy birthday, you say thanks, right?  Or if someone asks “how are you?” an “I’m well, and you?” is called for.

Here in AutismLand, it’s a little different.  You may remember (although I don’t expect that you do as it was many eons ago) that I often say “thanks” when I’m getting off the elevator.  The person on the elevator looks at me like I’m nuts!  Or, if someone says happy birthday, my response is, often as not, “you too.”  How are yous get met with “thank you” as well.

What happens is this: The person says the greeting, and I don’t hear it yet, so I respond based on what I think they said.  I fill in the blank and answer “appropriately.”  Then, after I answer, I process what the person actually said and it clicks.  That’s where the oops comes in.  But, given that the person is usually fifty feet away by the time I’ve processed it, well, it’s to late.

My other processing speed issue, related to visual-motor processing, is escalators.  Now, I can usually do them.  If I’m really overstimulated, sometimes I ask for the elevator.  But even on a good day, those pesky things take me a minute.  I tell whomever I am with that I need extra time… and it usually takes me 3-5 steps going by before I can get on.  So, it’s not a long time that I need… but if the person behind me is expecting fluid motion, well, they might trip if they’re not prepared for me to stop.

I tend to think that some sensory integration work would help me with processing.  Sensory processing and processing speed, for me anyway, are all wrapped up together.  After all, the speed at which I process sensory input affects the extent to which I can integrate the input.  I don’t have space or resources to do much sensory work… and I’m also kind of lazy in that regard… probably the most helpful thing to me would be a weighted deep pressure vest, but that’s not happening due to cost.  I’ll have to get creative!  My favorite word!

 

Big news, another post to follow

Have you ever done a puzzle with someone who just isn’t very good at puzzles and keeps jamming pieces together that don’t actually fit?  An old friend of mine would do just that.  This left me in the position of trying to figure out how to disassemble his pieces and reassemble them correctly, all the while avoiding sending the message that, “Dude, you kinda suck at puzzles.”

This post makes me think of those poor puzzle pieces.  I have two things to tell you… two puzzle pieces… but they don’t fit together.  Tempted as I may be to jam the pieces together and put them both in one post, I’m not going to this time (though I have before and likely will again).  It’s not good for either piece to be jammed where it doesn’t fit, yeah?  And I don’t want to take away from either thing I have to say by jamming it with the other information.

So, piece number one is that I’ve found a publisher, a real publisher, for Living in Technicolor.  This is the… oh, the second one I reached out to, Conditional Publications.  Conditional is a publisher by and for people with neurological conditions, including autism.  In fact, the founder has ASD!  It’s a very small group, and since they’re currently working on another book, it’ll be a little while until they get working on mine.  This is no problem for me.  I’m kept busy enough with other things that waiting is just fine.  Look who’s getting all patient, would you?

That’s puzzle piece number one, and I’ll leave you to digest that while I continue to mull and think about piece number two.

Oh.  Yes, I’m still on a break.  No, this is not blogging.  This, um, updating.  But really, I’ll blog as things come up and happen and occur to me.  I’m just not going to force it like I’d been trying to do.  It doesn’t work, anyway.