Susan's Blog

Sunday, February 19, 2012

The feelings remain, regardless of the name

Nat is not low-functioning. I hate that term. He would definitely be considered so, by many in the medical profession, and the rest of the world. I, too, have used it before and I am not going to anymore. I’m a writer, dammit; I should be able to come up with a better term.

There is so much in this blog about labels. I am too aware of the power of words to act like labels don’t matter. I am very tired of talking about this, and yet, I can’t stop. It keeps coming up, the question of whether to use Person First language, (“People with autism,”) or the other (“Autistic person”). Autistichoya makes very good arguments about the latter; Tim Shriver and the r-word campaigners makes very good arguments about the former. As always, my Libra self wants to be a bridge.

But I’m feeling tired of playing bridge. I’m worried about Nat and so I am going to be just his mom. I feel like what the hell does it matter, who calls him what. The problems, the guy, still remain. I love the guy. I hate the problems. I know I should be happy that he has a safe and supportive placement, one that I helped create. One that is going to have people there all the time. One that has made the future now.

The future being now is a scary thing. They told me that I could now have them take Nat to the doctor from now on. The staff is there for things like that. That they are to be responsible for all the medical and dental stuff being done timely — state regulation. Hah, that’s going to be better than I’ve done. They also said of course I could still do everything, but they would need to keep track of it all, just the same. I’m never going to have to do those things if I can’t — when I can’t.  They’ll take him to Social Group if I want. They will provide an entirely additional Social Group. It’s all good.

Then why do I feel sad about it?

Because it is exactly what I tried to do, which is the hardest thing a parent can do: I planned for when I wouldn’t be here. I took care of it. But — my God.

And then there’s what I still can’t do, can’t ever take care of: helping Nat himself deal with my being gone. Anytime I imagine something bad happening to Nat and then — not even understanding why! How terrible, how horrible. That is what matters. That is the piece where functioning level is important and poisonously apt. Let me talk about it, okay?

And also, there’s this: my Nat is sometimes a puzzle to me, more than my other two sons who talk — oh, I’m not supposed to say those things either, right — and that saddens me deeply, too. That is a parent’s plight, that is a parent’s right. It doesn’t matter what we call it, the feelings remain.


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