Self-Aware

One evening a week or so before school started, Olivia declared that she was using a scrap of material from one of Lyss’s craft projects to wrap around her (Olivia’s) left hand. She said she was wrapping her hand to stop herself from flapping that hand. Oh. Yes. The flapping; she’s become aware of the flapping. Maybe she’s always been aware of the flapping but suddenly, she’s aware that not everyone does it. And she doesn’t want to be one of the few who flaps. Sigh. Self-awareness can be a great thing. But then again, it can also be a confidence killer. I want her to be aware of herself and to be able to control her own body. I also want her to feel good about herself and not be worried about all the ways she’s ‘different’ from everyone else. It’s a tough line. After explaining to me that she was wrapping her hand to keep herself from flapping it, she asked me if I would talk to her new teacher this year about the flapping and see if her teacher, Mrs. H, had any ideas for how Liv could keep herself from flapping. She wanted to know if I’d ever done anything like she did. I think she was reassured when I told her that when I was her age, I did shake my hands; both of them. It was very much like the flapping that Olivia does. In fact, it probably was flapping. It started around the time my parents were getting divorced, so…take that for what it’s worth. It drove my mom crazy. Whenever I’d do it around her, she’d snap, “Stop shaking your hands!” I told Olivia that I was able to stop shaking my hands by putting my hands in my pockets, either the front or back pockets of my jeans. She seemed reassured that I’d done it too and I’d been able to stop. I reminded her that once upon a time, she’d sucked her thumb and pulled her hair out and she’d stopped doing those things. She liked knowing that. I’ve often wondered if it’s better to be so disabled as to not even realize you’re disabled or just this side of ‘normal’ and know you’re not quite normal. I love Olivia. I love her so much that it makes my heart hurt to know she’s hurting. And yes, I would STILL take away 5p- if I could. I would ‘fix’ her because it would make her life easier. I think she’s amazing just the way she is but I also know that having all of that fifth chromosome would take away some of the quirks, some of the challenges, some of the things that make her life harder. Self-awareness…a blessing or a curse?