Day 28. Year 2.

Hush, little baby, don't say a word.
Papa's gonna buy you a mockingbird

And if that mockingbird won't sing,
Papa's gonna buy you a diamond ring

And if that diamond ring turns brass,

Papa's gonna buy you a looking glass

What made me think of this lullaby tonight? A few things really. First thing: Ally was being super sweet tonight. She may only be 7, but she knows when Mommy is struggling. And right before bed she gave me a little card and present she wrapped up for me. It was one of those stick on jewels that looks like a diamond. About 2 years ago my diamond from my wedding ring, prongs and all, must have gotten snagged on something, and totally pulled off my band. I was heartbroken over it and never did find it, and never did get it replaced. And Ally said that she thought having a new diamond to put in my ring would cheer me up and look pretty. :) Awww....

And second thing: with everything that's been going on with Vicki, I feel like we have reversed time, rewound the clock, and are experiencing her autism diagnosis all over again. And all I want to do is hold her and sing to her and stroke her hair. So many times in the last week or so I have found myself questioning my judgement and feeling insecure, not knowing what to do. Like I don't have 9 years of autism under my belt. It's not like we've never taken Vicki to doctors and gone through testing and looked into different treatment options. I've been going through her medical binders and history and results of previous testing. It's not like we haven't tried and continue to use many different therapies and techniques. It's not like I have never seen behaviors before and looked at the antecedent, the behavior and the consequence. It's not like I've never heard about positive reinforcement. It's not like we haven't used visuals, timers, first/then boards.... We have done all of that and more. And yet here I sit tonight with pages and pages of notes from recent weeks. I have more questions than answers and I have no idea what to do next. Yes, we have many different tests and procedures to schedule for Vicki in the upcoming weeks and months. But what do I do in the interim? How do we get through each day? Everything Vicki does seems different and I am baffled. I don't know if what I am doing is right. I don't know how to help her. I don't know what to say. I don't know how to act. And I am scared.

I am scared. I am scared because there are so many things that I can't explain. I am scared because I am afraid to be alone with Vicki. Because what if something happens and I can't get her to go from point A to point B?  I am afraid I can't take care of my kids by myself. I feel like I need to many people right now. What if I can't get Vicki out of the van? What if I can't get her out of the bathtub? What if? What if? What if I go to Joey's soccer practice and she throws herself on the ground and I can't get her up?

One thing that I hope I have never done is isolate Vicki. Isolate Vicki from school activities, isolate Vicki from extracurricular activities, isolate Vicki from people. Because autism, in itself, is isolating enough. We've always done things as a family. Always. Vicki has always loved being out, going to new places, going out to dinner. And now. Now it's hard. And now I don't want to go out. I am afraid to go out. It's easier not to go out, not to try. Because what if? What if? Last week Vicki didn't go to dance class and I didn't take Vicki to a school board meeting where they were going to recognize her as a Special Olympic athlete. This morning Joey had a soccer game at one field and Ally had a soccer game at another field at the same time. And neither Mark nor I had enough in us to take Vicki. So we let her sleep in and had an aide come up to be at the house with her. Vicki was happy, she had Layse Black Cat, and she loves pulling the covers up over her head on a cold and gray morning, just like a teenager. But I hated myself for letting her. I hated myself for going to Ally's soccer game and enjoying myself. I hated how easy it was. I hated feeling relief. I hated leaving Vicki.

But I know Joey and Ally needed us today too. If I am having this much trouble, I can't imagine what the two of them must feel. They see Vicki struggling. They hear Vicki crying and crying and crying for hours. They know that something's wrong. And they are so wonderful and supportive of Vicki. We needed this morning. And we needed today as a family. We all played pictionary together this afternoon and laughed. We needed that. Vicki sat at the table with us too. Even though she lined up her rainbow play-d'oh and made a rainbow sundae over and over and over again. She was still there with us. And we all watched Pirates of the Caribbean tonight together. And when I asked Vicki what a pirate says, she said, 'Arggghhh...' And the kids laughed and smiled. And Vicki loved on her Layse Black Cat today. She wrapped it in a blanket, put a crown on it's head and gave it a bottle. I will celebrate that. Most definitely. I will celebrate.

And if that looking glass gets broke, hell yeah, I will buy her a billy goat. I will do whatever it takes.
xoxo