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.