Susan's Blog

Tuesday, January 6, 2009

No Show

I think the Today Show opted for a report from the Bahamian Health Minister, rather than my take on autism and the family, because they all seem to feel at this point that the cause of death of Jett Travolta was seizures, and that the Travoltas did try to treat him (with Depakote). So, may he rest in peace.

Monday, January 5, 2009

Today Show Appearance

Nat and I are going to be on the Today Show tomorrow (Tuesday) morning, the early part of the show (7 or 8 a.m. EST). They are doing a piece on autism and the family, in light of the Jett Travolta tragedy. They wanted to explore the idea of shame and autism, and they were asking me about that, and going public, etc. I hope they handle it sensitively.

Here are some pics Ned took of the filming:

Sunday, January 4, 2009


The Cartoon Network show “Chowder” was our inspiration this year for the gingerbread house. It is really called Shmingerbread, and you make it for Knishmas.

Tabblo: Shmingerbread

Ben’s favorite cartoon, “Chowder,” was all about making Shmingerbread for Knishmas. So we thought we’d try it, too. We never use a pre-fab house or a kit. We do it all from scratch and turn it into a three-day, all-family wintertime event.
See my Tabblo>

Thursday, January 1, 2009

Off to a Good Start

Last night we all went to a New Year’s party at a friend’s in Cambridge. All went well. Hannah and Max enjoyed playing with the host’s new Rovio, Ben played with our friend’s little sons, and Nat bounced around, listening to the music and eating the cookies. He was nervous around their dog at first, but eventually he settled down, which was a new thing. I was so proud of him. I did feel the need to explain his frenetic bouncing and flapping to people I met there, and I would do so with a smile. “He’s autistic, you know,” I would say. “I’m just saying. He’s very happy to be here!” And they would nod and that would be that.

I marvel at how I’ve changed in that regard. I know I’ve said this before but I used to dread bringing Nat places, and to watch people watching him. There has been such a sea change in me, however. Now I love to watch people watching him, I feel like they’re kind of lucky to see Nat. I feel that way about all of my children; very proud of their whole being.

And when we got home, around 12:45 a.m., Nat’s light was not working properly. Very quickly he ramped up to the screaming and the arm-biting. It is a terrible thing to witness, a person getting so worked up into a rage, and you just know that he knows it and he can’t stop himself. It has always felt that way to me, as if it were a self-perpetuating, snow-balling kind of thing for Nat when he gets that upset. I can almost feel him giving up, giving in to it. I think I do that, too. It is very familiar.

So that thought kept me connected to him and allowed me to think on my feet and help him, rather than just being afraid and reactive. I said sharply, “Nat! You can do this. Nat! Sit here, calmly, for two minutes. I’m going to set the timer.” He sat down, and immediately started screaming again, so I repeated the whole thing, even resetting the timer. One more go around, and then he stopped.

I think distracting him with the simple request to sit down and wait for the timer was a good way to create a space around him, so that he could regroup. I could then talk to him about how things break, how the light switch was broken and Daddy was fixing it. I reminded him that things break and we can fix them; see, there’s the screwdriver. He started sucking his thumb and even doing a bit of his own language, and I could tell he was feeling better.

I feel very proud that the whole thing seemed within a spectrum of familiar events. Nat did not seem like a creature, nor did the outburst seem “out of the blue.” It made a lot of sense, actually. Stupid old house with its old wiring. Anyway, I think it was the start of a good year.

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