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.

9 thoughts on “Two years

  1. Hey, Lydia! So good to “read” you again!! Love this!! I love seeing how you have grown & changed. You should be proud of all the hard work you have done. So glad your church is there for you. This reminds me of something that happened last week. We were at my son’s endo appointment & he was talking to a pretty girl & her mother while we all waited. He was flashing his movies & DVD player in front of their faces & I always try to explain why he is doing that. I told the mom my son has autism. The girl piped right up & said, “I have Asperger’s!” I couldn’t even tell! I complimented her on how well she was doing. She said she has had lots of therapy & works really hard on the inside. We all had a nice conversation. It reminded me of you! I can tell you do extremely well & that you work very hard at it. Keep up the good work & have a blessed Easter!!

    • I’ve always said and I still say that if you meet someone with ASD who appears “typical,” the best response is, “Can you tell me more about how it affects you?” I don’t like the, “I’d never know” and the “You seem normal!” That’s upsetting. Not criticizing you or even saying you did this, just offering my perspective and what came to mind. God bless and Happy Resurrection Day!

      • I like that, “Can you tell me more about how it affects you?”. I’ll have to use that. My son is on the high-functioning end and it always makes me cringe when people say, “Oh? He doesn’t look autistic.”. I know they only mean to be encouraging, trying to tell me that he seems to be handling his specific challenges very well. And I try to remember that I’m always in situations where I have no idea what to say, I’ve been called rude more than once. My brain knows all this, that but my heart reacts anyway.

        I also like what you said about not being in a box and just being you. I’m trying to teach all of my children that perspective, autistic and neurotypical. Heck, I’m trying to teach myself that! :P My goal with my son (i habitually set goals for everything or i get off course) is to find the balance between assimilating (as much as he needs) and staying true to his core personality. Yes, he’s autistic, but he’s a thousand other things, too.

        I found your blog through the Slice of Life feature on TPGA. I enjoyed reading your latest post. I like your writing and look forward to reading your next one.

  2. You are, always have been and will always be LYDIA! I don’t like saying someone is “autistic” – you aren’t cancerous, you have cancer. You aren’t autistic, you have autism. You ARE Lydia. Thank you for sharing your struggles, joys and life with us. I learn so much from you.

  3. Oh! Hurray! You’re back! At least for this post. I was thinking about you the other day, but things in my little neck of the woods have been pretty chaotic, so I didn’t go looking for you. So this morning. . . before I immerse myself in the chaos of my office, I figured I’d stop by and see if you’d written. . . and you did! A week ago!

    Anyway. . . back for long?

    • Hey, Jim :-)

      I’ve checked your blog a few times, too… even though I’m “not checking blogs.” Lily’s cuteness is just irresistible.

      I have no idea if I’m back or for how long. Playing it by ear. I’ve had a few thoughts of things to blog about in the last week since I wrote this post, but each time I decided that I wanted them to stay private. I have a thought now, but I’m running out the door so it’ll have to wait. Hopefully it continues to roll around in there and grow, rather than shrivel up and disappear.

      We shall see.

  4. Love your comment to Susan and your post! I chose to focus on voices of inspiration this month and ignore the light up blue. I also changed my bullying focus to those who help instead of the horrific stories. I do not have the time or energy for all of the battles.

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