Susan's Blog

Monday, February 18, 2008

Appropriate – In the Eye of the Beholder?

I believe that things like grief are recursive, but lately I wonder if that’s true for everyone, or is it more so for me because I tend to obsess and stay stuck in certain mindsets? Or maybe it is that for everyone, memories play a part in keeping us fixed in our lives, even the parts we thought were over.

Nat’s condition rests on me today, like an old afghan, mostly benign, maybe just a little itchy or moth-eaten. In the morning, after I suggested he watch or listen to something, rather than simply plant himself in the middle of the couch, I heard the familiar strains of The Hundred Acre Wood song. Well, that’s what he likes, my mind said in response to the complicated, muddy feelings seeping from my heart. The age-old questions: He’s still watching Winnie-The -Pooh? Is this okay? Is there something else I should be doing? Make him watch a real show instead of an old vid? “Nat, later on we’ll bake something, okay?” I called out, more for me than for him, thinking that to get Nat do do something with me is to propell him forward, to let him do his own thing is to allow stagnation.

I went off and did my thing. When I got back we all ate lunch and Nat reminded me of the baking. We got out Mom’s Big Book of Baking, as always, and chose a recipe; this time, molasses cookies. It all went just fine.

After that, I took a little nap and did the crossword. Nat was walking around again, I guessed he was looking for something to do. Or — is it that I wanted to see him “productive?” After all these years, he still does not know to get something out and play it. Is it that he doesn’t really want to play, or is it that he would prefer to remain in this, his easiest state, just walking fast and talking to himself. Today, though, I couldn’t take seeing him do just that, it made me feel pinched behind the eyes, so I became Teacher Mom for a while, suggesting we do puzzles, play games, anything that was “appropriate.” He willingly did it all, but the whole dime we were playing it was rote and rushed. The questions pulled at me; the afghan was feeling too small and my feet were getting cold. Is he enjoying it, or just tolerating it? Does he enjoy the pacing more? If so, why can’t that be the thing that he does?

“You want to listen to something now?” I asked. The little stereo wires lay tangled and disconnected, an upended bowl of dusty black spaghetti. The stereo had obviously not been working for a very long time. I felt absurdly like crying. “Max!” I called. “Can you help with the stereo?” Max came in right away and did his thing, looked at it, made clean sense of it in seconds, and the green face of the CD player lit up. But Nat was already standing, hovering, looking anxious as he gets over technology that doesn’t function properly the very first time. I remembered the iPod Dad had given him for his birthday, loaded with Simon and Garfunkel and the Beatles and Elton John — Dad’s favorites and also Nat’s. I hooked him up with the iPod and left him, sitting on his bed, hunched as if the earbuds weighed him down. I sighed. Or is he maybe relieved, relaxing, glad that I’m letting him be?

“I’m going back to my movie,” Max informed us. He’s watching a movie? Again? But I didn’t say anything. “Okay, honey,” I said. I was touched that he is still so helpful, so considerate, even as a teenager. Max, I also realized, is allowed to just veg, but Nat is not. Is that fair? Is that right?

I felt like I had done pretty much all I could, so I went downstairs to my crossword puzzle. What a fricken waste of time that is! Not to mention that I never complete them! Shouldn’t I…?

I guess I’m not really allowed to just do my own thing, either.

Maybe soon I’ll get to a point where I realize that there is no real way of judging what is an “appropriate” use of leisure time; it’s really all a matter of how comfortably we wear our lives.


The afghan analogy is so perfect.

I can relate to this so much this week. Jack is out of school for winter break. I attempt to keep him engaged, but feel very much like I suck at it sometimes. 🙁

I’m not sure it’s possible to have guilt-free down-time. If you figure that one out, let me know…

— added by Judith U. on Monday, February 18, 2008 at 5:09 pm

I find myself wanting to fill every moment of George’s day with something educational, and I have to remind myself to just let him be sometimes. A friend put it very well when he told me that George may be autistic, but he is first and foremost a little boy.

— added by Kirsten on Monday, February 18, 2008 at 5:14 pm

The ABA is going on five days a week here. 2-3 hours right after Chance gets off the bus. I have to think about these same things-what to have him do. They want Chance to transition easily from one activity to another. He also is working on “time compliance” for 8 minutes currently. This requires him to stick to a specific task or plaything the whole time. We check on him every couple minutes. But the real-life when I need a usually more like heavy repetition of Spongebob or Bill Nye or Popeye or Powerpuff girls or Little Einsteins..being watched as long as the boys will let me rest. They want to minimize the flapping and running, but sometimes I either can’t or just plain don’t want to. At least I know he is happy when he’s flappy…meanwhile I feel a strange combination of guilt and satisfaction. -Tina G in MN

— added by Anonymous on Monday, February 18, 2008 at 7:41 pm

I try and remember that everyone needs a little down time sometimes.
BEst wishes

— added by Maddy on Monday, February 18, 2008 at 8:36 pm

Yeah, it’s tricky. I’m more or less of the let them be, school with, if-it-ain’t-broke-don’t-fix-it leanings. But we just got finished deciding that we needed to up the amount of structure and activities in our guy’s day because he has been getting disregulated as a result, we guess, of spending too much time doing the same thing (in his case, editing videos)

— added by VAB on Monday, February 18, 2008 at 9:13 pm

I’m glad to hear I’m not alone with feeling guilty if I let my kid walk around stimming on kitchen utensils while I try to get stuff done. I’m glad Tuesday is back to school.

— added by Candy on Tuesday, February 19, 2008 at 1:26 am

I’m 25, and I still like watching Winnie the Pooh (and all kinds of other kids’ cartoons too, including cartoons for the very youngest) too. No, I don’t have kids :D.

— added by Norah on Tuesday, February 19, 2008 at 4:29 am

We have issues with this too. Engaging Jared when he’s reciting or singing makes that eccolalia more interactive. But the redirection described below has yielded some interesting outcomes.

Jared loves tape – two-inch wide masking tape is his favorite. Stephen and I debated about scissors, do we give him the safety scissors which will do a sucky job (and lead to frustrated screaming) or do we take a chance and let him use bone fide scissors. Well folks, we opted for the “safety be damned” route and he still has all his digits (so does his younger brother!) and his tape constructions have gotten fairly intricate.

He used to just tape his trains to the track – huge balls of tape that would obscure whatever Thomas train he had chosen. God forbid you should toss a big tape ball without checking it’s sticky core.

Now the tape is being used to support long stretches of elevated track – by long I mean twenty feet or so. For reals. Jared keeps experimenting with tape strength, tension, weight loads (adding rocks to his freight cars) and inclines.

What started as a seemingly wasteful obsession is turning into a way keep Jared productively occupied. Sure, he howls when one of us jostles his creations, but more often then not he just gets back at it. Seriously, yesterday the living room was so criss-crossed with tape it looked like one of those rooms protected by a web of laser beams. Very low budget mission impossible.

Everyone have a great day! Lisa

— added by Anonymous on Tuesday, February 19, 2008 at 10:42 am

According to Temple Grandin and Judith Bluestone, stimming releases endorphins and is actually physically soothing to the autistic individual. For this reason, in my house, unless it’s interfering with something important, we don’t stop stimming. Think of how mad you’d be if someone abruptly told you to stop bellydancing right in the middle of it. It’s a stress release. The only difference between his (Nat’s) version of stress release and yours is that yours is considered more socially acceptable. Let him be. It’s really okay. It is. You’re not a bad mom. Hugs to you.

Oh, and if it makes you feel any better, I watch Spongebob on a regular basis, and I’m 34. Hey man, sometimes your brain just needs to check out for a little while, know what I mean? 😉

— added by ASDmomNC on Tuesday, February 19, 2008 at 1:06 pm

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