Day 22. Year 4.

I posted a facebook post yesterday morning, and tonight I thought I would talk about it. Here's the post: "It's so easy for me to just shut my little family up in our house and not try anything that might be difficult for Vicki... sometimes I do that, but times like this weekend... we put it all out there and give it a shot. If you could send some good thoughts Vicki's way so that not only can we be present and attend these activities, but that she will enjoy them and be happy and flash that Vicki smile. We have Vicki's dance rehearsal today and a ceremony tonight for Ally to bridge from Brownies to Junior Girl Scouts. Tomorrow is Vicki's dance recital and on Monday Vicki will be participating in her 5th grade graduation and then in the evening we will all go to support Joe at his 8th grade Assembly. I am a big ball of nerves and tears. Better go get my camera charged and myself charged."

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

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!

Everybody makes mistakes
Everybody has those days
Everybody knows what, what I'm talkin 'bout
Everybody gets that way

Day 21. Year 4.

I figured that after my last post, I better write a follow-up to the movie incident. To sum it up, I will sing you a song from Dora the Explorer. Ready?
We did it. I did it. She did it. Hooray! We went to the movies to see Rio 2. Yeah! We did it. I did it. She did it. Hooray! We walked in. Sat down. And we stayed the whole time. Yeah. We did it. I did it. She did it. Hooray!

A very dear friend of mine had been privy to a lot more of my verbal stress and sadness and anger and self pity and all of the other feelings that came out in my last post. And she sent me a text. "Have a little faith in yourself."

It's so true. Faith in myself is something that autism has stripped me of. And dare I say that after Friday, maybe just a little sliver of faith as been restored. Not much. But a little bit. I left that movie theater feeling as if I was the most awesome mom in the world. My pink, sparkly supermom cape was flapping in the wind and my feet weren't even on the ground. And there you have it. The highs and lows of autism. The gamete of  emotions that I felt... all to take my children to the movie theater.

Just wanted to tell all of you thank you. Thank you for reading. Thank you for praying. Thank you for your kind words. It means the world to me to have so many people who care and believe in me and believe in Vicki. Lots of things helped to make the movie a good experience... from the fact that Vicki was having an 'on' day and she was happy and really wanted to go see Rio 2 to having my son agree to come with us (for the small price of a box of recees pieces). Ally and her friend were so well behaved. And it happened to be the last day for Rio 2 at this theater and we were the only 5 people in that theater. So even though we had a few little glitches, it was only noticed by us. Had my son not gone with us and stepped up, I don't think the trip would have been as successful. I had to have him take Ally to the bathroom in the middle of the movie. If he wasn't there, I don't think I could have gotten Vicki to get up from the movie and transition to and from the bathroom. With about 20 minutes to go Vicki got really fidgety  and was a little louder... but again, we were the only ones in the theater, and that definitely made me feel more comfortable. After the movie my son stayed with Ally and her friend so they could make another stop to the bathroom and I took Vicki to the van because she was getting upset and almost dropped on me. Thank goodness for the handicapped parking pass and yet again, for my son. But all in all, the outing went very well. And after I got Vicki into the van and tucked my supermom cape into my purse, I let out a sigh of relief. It's amazing that one can hold their breath without realizing they were holding their breath. I will take this one victory and celebrate it today.

A happy Ally and a happy Ally's friend. A happy Vicki. And a happy Joey (who enjoyed his recees pieces). And a grateful mommy. I may have even smiled and laughed a little during the movie and danced along to some songs.

And I will leave you on this beautiful Sunday morning with not just the Dora song to get stuck in your head, but also an oldie and a goodie from George Michael.
You gotta have faith, faith, faith
You gotta have faith. Baby.