These are my choices?

19 Dec

In the movie, “Postcards from the Edge,” Shirley MacLaine is talking about how she’s a bad mother.  She says, “I was such an awful mother… what if you had a mother like Joan Crawford or Lana Turner?”

And the daughter, Meryl Streep says, “these are the options? You, Joan or Lana?”

So, rough couple of days.  I’m frantically channel surfing to avoid the images of tiny coffins containing the bodies of murdered six-year-olds.  And I’m so grateful, so profoundly grateful for my little Chaos.

Chaos has a cold.  Well, we all have colds, but Baby, he has so many colds that I think he actually has a viral queue, and the next cold will wait politely until the current cold has passed, we’ll have about a day where we can enjoy Baby Peanut without getting covered in snot from his widdle nose, and then the next cold comes in.  I’m not even kidding.  It doesn’t bother him much… he’s such a pleasant, agreeable little fellow that he just takes  most of it in stride and keeps on chortling.  “Dog!”  he shouts.  “Duck!”  “Window!”  “I want dat!”

And can I just say, I used to wonder how parents of neurotypical kids got their kids to do things like talk and eat solids.  It turns out that most kids JUST DO IT ON THEIR OWN and the parents really don’t have to do much other than keep them from choking to death. Neurotypical kids practically raise themselves.  At least, that’s how it feels to me.  Don’t disillusion me.

So when I say we all have colds, assume that Baby has a cold.  Also if I say we’re all healthy, assume that also means that Baby has a cold.  I have a cold and the Bishop has a cold, and Chaos Peanut has a cold.

Chaos Peanut does not take viral infractions in stride.  Her stuffed nose causes sensory meltdown, she screams for “napkins” when she can organize herself enough to access language at all.  And when she’s not screaming, she’s off in la-la land and you can’t talk to her at all.  Really.

“Chaos are you hungry?  Do  you want to eat?”


So I touch her hand, get up in her face, search for eye contact.  “Chaos, do you want to eat?”

Chaos turns her head away and begins humming the theme from “Super Why.”

And so on.

She can be like that normally, but not quite as aggressively so.  Tonight, Chaos ate two bowls of pureed macaroni and cheese and then lay down on the couch.  We don’t let her fall asleep on the couch, because if she does, she’ll be up all night when we put her to bed.  When the Bishop caught her drifting off, he said, “Do you want to go to bed, Chaos?”

Her response was to start the most awful sound that I usually describe as howling.  Basically, Chaos has used the considerable power of her mind to come up with the single most horrible sound that she could make.  It is the kind of sound that a parent would do anything to avoid.  Think the screams of a child in horrible pain, only ten times louder.  The kind of sound that makes strangers call the police first and ask questions second.  That’s Choas Peanut’s howl.

“So put her to bed,” I said to Bishop, and he coaxed Chaos back to her bedroom.  She howled the whole way.  He helped her change into PJs (she howled) and tried to convince her to take some Motrin (howls) and then I finished putting Baby Peanut to bed and I came in (howls) and we coaxed Chaos over to the toilet, which she used, while howling, and I convinced her to wash her hands, more howling, and then we tried to get her to take some Motrin again but she howled so much that we put her to bed.  No doubt she will be up at 3 a.m. and howling and will not be able to access any language in order to tell us what’s wrong, not that we could necessarily fix it, but maybe she would feel better for having told us.   You know, maybe I could comfort her, if I could only get her to stop howling first.

She gets OT outside school and the OT wants to discharge her because she has “met her goals.”  Sure, I mean, if you set the bar low enough, I guess you could say Chaos has met her goals.  Bishop and I made the point that Chaos should have NEW goals, not be discharged from OT, and they are STILL trying to discharge us.  They had some nonsense about how she could be reevaluated in six months, which you and I both know means a full year without services because it would be six months after that before we could get a spot on the schedule.  I can’t figure out why they won’t just make new goals.  It’s incredibly frustrating to us, because the child we see, a child who is so upset about a common cold that she sits there and screams and can not access her language, settle herself down or regulate herself enough to stop crying… that is a child who needs OT.  She needs something.

I need something.


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