Susan's Blog

Wednesday, August 9, 2006

Range of Emotion

Yesterday was a satisfying day. Well, almost. Flawless sunshine, meetings with friends, a lot of writing, out with the puppies to McDonald’s.

I had coffee with a guy I used to be on School Committee with. I first met him eight years ago, when I was attending one of my first special needs parents meetings in my town, so I was a complete political rube. He was at the meeting to represent the School Committee and answer parents’ questions. He had a nice smile and blue eyes that drooped down in the corner and looked a little like Bob Dylan to me, so I liked him right away. I also liked the way he listened carefully to everyone there, never got rattled, and always had an answer that was packed with empathy, information, plus political innuendo. Few people can win an argument with him, and even fewer realize they are even arguing.

We have been friends ever since that night. When I ran for School Committee, three years later, he helped me with some very good advice. Over the years, we have been on different sides of issues often, and I have to admit, he has changed my mind once or twice but I don’t know if I’ve ever managed to change his. I still remember the one time that I convinced the other seven members of the Board to do something in opposition to what he wanted. Wow.

So yesterday morning I dipped back into local political intrigue over a Starbucks iced coffee, and got reacquainted with those happy blue eyes. And plotted the next big political battle in my town: the CPA (Community Preservation Act). I won’t bore you with the details, suffice it to say that the Libra in me is making it difficult to decide which side I’m on.

Then, home with the puppies, and I took them to an early lunch at McDonald’s. Benj was afraid he would get the Polly Pocket toy (rather than the *&*@! Hummer) until both Max and I reassured him that if you ask for a “boy” Happy Meal, you will get the Hummer. I really wanted the Polly Pocket, but it was not my meal. Nevertheless, the Hummer was kind of cool, military green, with a mechanical hook on the front that could tow the entire Hummer upwards.

Then, lunch with Emily, my favorite writer friend and one of my favorite people. She is due to deliver her third baby in about 8 weeks, and her body looked lovely, like a colorful scoop of ice cream. She wore a big pink floppy hat, a stretchy floral peasant top and a white skirt. I wanted to be pregnant, too, just for the look! But she tells me she longs for a waist. “Oh, the belts are so great this fall,” she lamented wistfully. I remember that feeling.

We both ordered the Greek salad with grilled chicken and she ate voraciously. I picked at it, not because I’m delicate, but because the roof of my mouth is still raw from having burned it on a verboten brownie Nat baked on Friday.

Back home with the puppies, who were playing with Max’s Mac, “Garage Band.” They were recording their voices in creative ways and setting this to dance music. Ben’s bubbly laugh and Max’s more hoarse one can be heard through the pulsating sounds. I wrote a lot in the same room with them. Later Ben asked me to help him with the “Bug-A-Tron,” a Lego insect/monster/robot. Quite grotesque and ingeniously engineered. My contribution: a big drill-like stinger on the back. Ben resisted my idea for a while until I produced the piece and then he could visualize it.

I took Nat to speech therapy, and I wrote some more in the zoo-like waiting room. I could not believe the kids. Two were from one family, and two more from other families. Totally “absent” parents, in the sense of being there but not in charge. The kids were playing D&D; right at the feet of the other adults. The mom asked weakly if “it was alright” with me. I nodded, smiled, and tried to block it out. But it was tough. Then they started playing ball. Ball! Right there between the adults. Did anyone else care, other than me? Why am I the crab? I tried to block it out and willed it to go away. I was struck, as I so often am, by the way other kids are allowed to act — so out of control — and here I am with Nat, who is deeply affected by autism, working so hard to cue him into how to behave among others, and 99% of the time, he does a fantastic job. He and I work so hard at this, while the rest of the “typical” world is allowed to do as it pleases. Yet I can’t seem to be any other way. And I am very proud of Nat’s excellent behavior. He is so pleasant to be with because of his hard work. And because he is so cute.

Then, after with Ned, we agreed to all meet for dinner at the Cheesecake Factory, so that I could meet a colleague of his. She is a graphic designer and works from home in L.A., so I had not met her before. She is young and pretty; clearly connected to Ned and they have a good work relationship. She was very taken with the boys, especially Ben, and they drew things together while we waited for our food. (I ordered a trough of chicken nachos, avoiding the chips. )

Several times during dinner I noticed Nat looking across Ned at her. He looked like he wanted to say something. He kept smiling at her. I wanted to help him, give him the words, but I didn’t know what they were. I felt an aching pain for him. I felt longing: was it his, or mine? Is he lonely? Did he want to talk to her? Or was he okay? What could I do? “Sweet Guy!” I called to him. “You’re happy.”
“Yes,” he said.
Okay, yes.

Back at home, I belly danced with no ill effects, other than fighting with Ned because I felt that once again he was not paying any attention. (Even though he came into the room to be with me while I did it; still, laptop open, typing away. Only looked up when I dangled my veil over him.) And I am getting really good at it, too. I’m thrilled to have no pain; physical therapy is really working.

We did not go to sleep angry (we never do), so we talked until midnight. That is the work of a good marriage. As Ringo said, “It Don’t Come Easy.” But that Ned is worth every fight.

Slept well, got up early, and here I am. More flawless sunshine and lots of writing ideas and several good plans.


I can relate to what you said about natty, It seems at times our lives are one big prompt- people dont’ understand what a 24-7 commitment it is to get them to be able to have a functional day…

Nat prob thought she was pretty….He is a boy a young man before his autism…but you already know that…you have convinced me of that in my own life…

— added by Kristen on Wednesday, August 9, 2006 at 9:05 pm

My wife Marlaina and I are only into this Adventure in Autism for the 2.5 years. The ABA thing just the last year.

Yeah…one big prompt. I can totally identify with that. On an hourly, and moment-by-moment basis. Every day.

We’re at a point in Tony’s life that sometimes we’re not sure if we’re dealing with Autism, or Tony just being an insane 2-year old. Little bit of both, I suppose.

The worst part of all of this is that in the State of South Carolina, finding qualified providers is hard enough…but finding just basic respite providers is pretty much impossible. The state pays these people $7-8 per hour. Can you even trust someone willing to work for that amount of money?

Oy. And Vey.

Did I mention our son is also on a sleeping strike for the last three weeks? If I wasn’t so delirious from a lack of REM I’d probably find all of this mildly amusing. Or disturbing. Hard to tell when you wear our shoes!

But this too shall pass…

— added by Anton on Wednesday, August 9, 2006 at 9:56 pm

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