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Thursday, February 19, 2009

When do the compensatory rewards start rolling in?

I think for many years in life I really did feel like if something went very wrong for you, somehow there would be rewards or treats or compensations to balance out the wrong. I think it's because when you are a kid, that sort of happens---if you get very sick, you get some treats like soda you wouldn't otherwise have, if you miss a party at school, you might get a treat at home, if you cry because your sibling gets to go someplace you don't get to go, you might get to do something fun at home. I don't know why I thought adult life would be more that way. I guess it still hits me all the time that it just isn't. Maybe that is where the whole stupid Holland story comes in---you have a child with a disability, and things won't be what you expected, but you will get this whole OTHER bunch of great rewards----meeting all kinds of interesting new people, taking joy in every little achievement, etc. Well, I'm here to say right now I don't feel like I ever made it to Holland. Maybe I am still on the ship or airplane that will take me there some day.

I just felt so tired of being the mother of an autistic child today. We had my friend Fab over and it was great to see her, but I kept being struck by how I could not just ever relax and assume Janey was okay. I let my guard down for just a minute when she was in the kitchen alone, and she smeared her diaper all over. I let her play with the kids and something upsets her and she grabs hold of Fab's daughter and scares her, and me, I hope her daughter didn't realize that Janey was probably about to bite. Janey was happy to see Fab, but called her all kinds of random people's names, including my favorite for her to call other people, Mama. When Janey was upset with me today, she kept calling for Miss Heather, the OT at school.

I don't think Janey being autistic is making my life more rewarding. I probably am supposed to make myself think that, but I don't think it. I love her just how she is, but I can certainly picture a different Janey, one without autism, not that I would love that one any more than this one, but my life would be a lot, lot, lot, lot easier.

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