April 2, 2015

Everything and Nothing

Baby Bee swings her feet as she sits on a chair in front of the tv. She’s home with a cold. Her colds get annoying because Baby Bee gets obsessive about coughing and clearing her throat. I try to remind her that she’s fine. That she doesn’t need to cough like that. I try to help her break that pattern. Sometimes I can and sometimes I can’t, it just depends where her mind is at that time. Her smile is big and bright as she watches whatever is entertaining her. She fidgets a lot, though. Her feet swing. Her bottom wiggles. She does tricep dips (seriously). She bounces her feet off the ottoman.

I’ve been worried about Baby Bee, you know. I’ve written about how she’s kind of other. I’ve watched her development and while it is typical in some places, it’s been atypical in other. She’s floppy. She refuses to write. She becomes agitated if strangers are around. She takes weeks and months to settle into a normal classroom situation. She actively and loudly refuses to do things. I’ve debated whether or not Big Daddy and I are raising a Class A Jerk. Thinking about Baby Bee trying to exist in Kindergarten, as she is, is enough to give me a panic attack.

So, we reached out to Baby Bee’s amazing Teachers and Therapists and asked for help and when the results came back, we were both surprised and not.

Baby Bee has Autism Spectrum Disorder.

Or, if it makes more sense and sounds less PC, Baby Bee has autism.

She points at the tv screen with her middle finger. I remind her, for the millionth time not THAT finger. She corrects herself and draws shapes in the air that she cannot explain. I’ve asked what they mean. She doesn’t seem to know. Is this a phase? I think I remember doing something similar when I was younger. Or, is this other? I can’t say.

Everything about her has changed and nothing has. She’s totally different and she isn’t. It’s one of the strangest experiences I’ve ever had, this diagnosis which changes everything and nothing. Something big has happened and yet it hasn’t.

No diagnosis can change who Baby Bee is. She’s still her. She’s still knobbly knees and unruly hair. She still prefers to bury under you when she tries to sleep. She still likes to skip and play pretend. She still counts her sister as her best friend.

But…

Everything seems tinged with a “but”. “Baby Bee has a great sense of humor” but does she? Or is it her being other. Is it on purpose? Or by design of her disorder. “Baby Bee is super active” but does she have no other choice to find or avoid sensory input. Does she jump off things because she’s a daredevil or because that’s the only way for her to feel or not feel things. Will treatment change her? Will it not? Do I want her to change? Do I not?

Initially, I felt driven to do. To get appointments and assessments and information. I googled. I read. I worried, but right now, I feel like I’m in this holding place. I watch Baby Bee closely. I’m more careful with maintaining routines and expectations. I remind the Princess that Baby Bee might take things literally, so threatening to throw her in the trash could be terrifying to her. All of that testing and assessing is coming for her, but for now, I feel like i need to watch and to know my daughter in a way I haven’t for the past five and a half years. I watch her face, as she speaks, in a way I haven’t for a long time. I watch her movements and listen, closely, to the inflection of her voice. I feel like I’m learning her again, except that I’m not. Everything is new and yet it isn’t.

Everything and nothing.

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