For as long as I can remember, Phoebe has always craved 100% of my attention unless I am physically away from her. Because I am her constant, she does NOT want me to pay any attention to anyone else. When I say anyone else I mean ANYONE. We went to the Secretary of State this week, because she wasn’t feeling the greatest. While there, I was making casual conversation with the woman helping us. I could tell that Phoebe was about to lose her mind. Finally, she blurted out, “CAN YOU NOT TALK TO HER PLEASE?” While embarrassing as this is, it doesn’t really phase me anymore. My younger self would have cried all the way home. Today, I just roll my eyes and keep going. Give her a time limit we will be there and move along.

This is just the tip of the iceberg. As a younger girl, she would often try to get people to walk away from us by yelling or saying completely inappropriate things (MY MOM HITS ME! I HATE MYSELF- for example). She knew I would get her away from them as soon as I could. Phoebe even does this with her own grandmother. She knows that we will talk and talk, and that she won’t be the focus of the conversation. It has been getting better as years go on, but it’s not ideal. I cringe sometimes when I see someone she doesn’t really know, because I realize it could be a complete blowup, and I’m never quite sure what she will say. She knows how to push my buttons (to say the least). Her newest thing is she doesn’t want me to be awake when she’s asleep. She has to know exactly when I will be in bed, or she will wait until I go. She doesn’t want my attention away from her, even if it’s doing work on the computer. This is mind-blowing and super frustrating. I’m still trying to figure out how that’s going to play out.

I see so many families with autistic children who are able to manage these behaviors, or have their personalities figured out. I still can’t say that I have it completely figured out. Just when I think I do, she changes things. I completely ignore behaviors, and they get better or they get much worse. I’ll punish certain things and it gets better or completely worse. I try to change her ways and she just won’t. Points systems, charts, etc. and none of it every seems to work. She’s smart enough that she knows exactly what to do when, and how to get what she wants. It’s exhausting.

My plan over Spring break was to clean my house, and get organized. I have spent most of it letting Phoebe decide what we do, and let the other stuff go. I am just too exhausted to fight it. I’m embarrassed to say I took a lot of naps. I am trying to do errands and must-do things when she heads out with her caregivers. That way, I don’t need to be yelled at or feel like there is a ticking clock watching me. Until I find the right placement, I guess I’ll live with it being all about her.