Saturday, December 10, 2011

Awareness, the Nutcracker, and Guilt

Lilli seems more aware to us lately, and I have been pondering this.

She might not really have changed at all, but how we are treating her is changing. Slightly. We have always hoped she knew and understood everything that is going on, but never really knew for sure. We have always talked to her as if she understood. We have treated her as if she understood, for the most part. But now that I know for sure that she knows what is going on around her, I am a little more careful about what I say and do.

It's the little things. For example, do I explain to Lilli that I am going to go to the grocery store to get milk and I'll be back in a half- hour? Or do I just tell the nurse and leave because Lilli acts outwardly like she doesn't care what my plans are? Do I ask her what she wants to wear? Does she care? Or do I just choose an outfit and put it on her?

Body language is one of the toughest things about autism, if you ask me. We think someone is listening, or not listening to us, based on how their body acts. In addition, we wait for an appropriate verbal response such as "Okay Mommy, I'll see you later." I always know when my husband is not listening to me, even though he says he is. I catch him every time and quiz him on what I just said. Who doesn't do that? But with Lilli, she almost always acts like she is not listening. She does not always look at me directly or even stand still with her body facing me while I tell her something. There is no verbal response. Many times there is a hug or a kiss, which might mean, "Okay, I understand," or… it might just mean I'm standing there and she loves me, so she's giving me a hug and a kiss unrelated to what I just said. The rare times that she does look right at me and stand still and act like she is listening to me, it is significant.

Each day I have to remind myself that even though Lilli does not always act like she understands, she truly does.

I also think about how she has been unable to tell us very clearly what is on her mind all of these years. Many people have given up on her along the way, or never believed in the first place that she was intelligent and able to understand. I wonder how that wears on a little person after a long time. Maybe she gave up to a certain extent. Maybe she acted like she didn't understand what was going on because most people did not believe that she understood anyway, so why bother? If people treat you like you're crazy, maybe you start to think that you are. If people treat you like you're ugly, you probably think that you are.

For years I have told Lilli that she was smart. I'd always hoped. I would tell her, because that's what mommies do. Kids need to hear things from their parents so that they will believe it themselves. I tell my other kids those things. Lilli needs to hear it too.

I think maybe this experience with the ipad is just making all of us in the family more aware about a lot of things.

One thing I am struggling with today is what to do about the Nutcracker performance we are going to in a few hours. This morning I asked Lilli what is today? She answered "De" – for December, I'm pretty sure. Totally something Chloe would do. I said that's the month, not the day, what day of the week is it? She typed "Fr." I said no, it's Saturday. I asked her because I wanted to know if she knew because today will be different. Chloe will not go to school, and babysitters will come, and Jasen and Chloe and I will all get dressed up and leave to go see the Nutcracker today.

I wrote in an earlier post about how I struggled with not taking Lilli to the Nutcracker. I took her to the symphony on a trial run to see how she would act. It is not going to work to take her to a two hour performance where she will struggle to sit still and not squeal and clap, or maybe even cry out with frustration as we try to keep her in her seat. I said that I would not feel guilty. But today, I do. I can't help it.

Last year, Chloe and I went without Jasen. We got dressed up and Jasen took our picture in front of the Christmas tree, and we left. No explanations. Just kisses goodbye. This year, Jasen wants to come. Chloe has been so excited about the Nutcracker all year long, and he wants to be part of this experience. Josh obviously doesn't understand or care. But Lilli will.

What will I say to Lilli today? Will I tell her the truth, that we are going to see the Nutcracker without her, and have fun at home without us? Will I just not say anything and hope she does not notice that we are gone for a few hours? Will I try to soften the news and leave something special for her to do while we are gone? I think I am going to try the third option. Her ABA therapist is coming today and that will keep her busy and happy. I know that she will have fun while we are gone.

But I still feel guilty.

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