So here it is, Sunday night. We are 2/3 days done. And I thought I would try to be pretty honest in this post tonight with how things are going. Writing it all down really helps me to put things into perspective too.
The first thing I want to say is how very proud I am of Vicki. One of the things about autism is that I really have no idea what she is feeling inside. So many people have asked me if she has ever sat down at the computer to try to type. I'm sure a lot of you have heard stories about how young adults with autism have sat down at a computer screen and was able to type, type out their feelings and give themselves a voice. Yes, I admit, I have tried this with her. And she loves to type.... but so far she will only type about food she sees on pinterest. :) And right now, that's good enough for me. In face, it's phenomenal. Because by even just describing the food she sees, she is giving me so much insight into the way she thinks. Anyway, sorry... I digressed. What I am trying to say is that feelings are difficult. And behavior is difficult. And how one feels directly impacts how one behaves. And feelings are unpredictable. Therefore behavior is unpredictable. And that's about it. I know Vicki feels. And this weekend I'm sure she felt a lot. Sometimes, the things that I fret about the most, the things that I think are going to be the most difficult, end up being just fine. And I let a big sigh out not even realizing that I am holding my breath. And then something happens. And I know Vicki feels and she reacts. And then out of nowhere I am blindsided with a behavior, a reaction, that I am not at all expecting. So. That's life. It all ebbs and flows. This weekend I have gotten that coveted Vicki smile. I have gotten to see the sparkle in her eyes. But I've also seen some of the most gut-wrenching, heartbreaking displays of utter.... I don't even know what to call it... But when I see it, when Vicki reacts with it, it hurts. So deeply that it feels like my heart is physically breaking for her.
Just to clarify a little bit, without going into too much detail tonight, because frankly, I am emotionally exhausted and I know we have one more really big day ahead of us....
Vicki danced. :)
You know, maybe trying to write a post tonight wasn't the best idea. I want to share more. But I don't want to. I want to give you the feel good post about a little girl who put on her sparkly pink dance costume and had beautiful curls bouncing in tight ringlets around her twinkling bright eyes. She did. And her hair was bouncy. And she smiled.
But I don't want to tell you the deeper story, about what else I saw on the stage. If you were sitting beside me in the audience, you may not have seen it or felt it, but I did.
It's so hard to know if what you do for your kids is what your kids want you to do for them. You know? For all of my children, I want to give them the opportunity to try lots of things and make the decision for themselves what they want to do and what they don't want to do. With every fiber of my being, I believe Vicki loves dance. I believe that she loves putting on the costumes and the make-up and she loves the music.
But sometimes I see the fear and the pain and the anxiety and I question myself. Sometimes I look at her out there on the stage, and I look at her posturing and I look at her aide assisting her. And I think, am I doing the right thing? She holds her ears so much anymore. To the point where if she is raising her arm I can see her shoulder come up ever so slightly so she can block some of the sound to her ears. And it's what everybody else doesn't see, I didn't even see it tonight because I wasn't backstage with her. Vicki's OCD tendencies come out in full force, especially when she is anxious about something. Let's just say that I hate that she is a slave to her memories. That's the best way I can think of to describe it to you. She knows exactly what she did last year backstage at the recital. She knows exactly what movies she watched on the portable DVD player. She remembers every last detail. And she needs to recreate it. Even if she doesn't want to. She needs to. And, it is so hard to watch. The yelling. The pain in her eyes. The dropping to the ground. The anger. The yelling. Over and over again.
I take a lot of pictures. A lot. And I will post the cream of the crop for you. I will post what I want you to see. But, and I know I've said this before... For every 1 picture of Vicki smiling and engaged, there are 100 pictures of her vacant eyes looking far away and the smile that never quite reaches her lips.
But if I don't put Vicki out there sometimes... give her a chance, let her experience it all.... then what? She will sit on her couch, hold her cookbooks on her lap and just stare off into space. She will not connect with living. And in living, you grow and you learn.
I have a lot more to say about some stuff that happened after the recital... but... I still have 8 days left to write. I'll save that one for another day. Thanks for listening. As always.
Thought I'd leave you with some of the lyrics from Vicki's dance recital piece:
Sometimes I fix things up
And they fall apart again
Nobody's perfect
I know I mix things up
But I always get it right in the end
You know I do
And they fall apart again
Nobody's perfect
I know I mix things up
But I always get it right in the end
You know I do
Next time you feel like
It's just one of those days
When you just can't seem to win
If things don't turn out the way you planned
Figure something else out
Don't stay down, try again, yeah!
It's just one of those days
When you just can't seem to win
If things don't turn out the way you planned
Figure something else out
Don't stay down, try again, yeah!
Everybody makes mistakes
Everybody has those days
Everybody knows what, what I'm talkin 'bout
Everybody gets that way
Everybody has those days
Everybody knows what, what I'm talkin 'bout
Everybody gets that way
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