Susan's Blog

Friday, March 27, 2009

I Walk the Line

Years and years ago, when Nat was a baby, Ned was playing with him, and suddenly Nat looked at him and with a dramatic pause and a very wise face, he said, with such profundity, “ooo.”

Mr. Ooh made us laugh and laugh. Wiser words were never spoken.

I can’t tell you how much I look forward to 3:34 on Fridays. I miss Nat so much, and the first sniff of his face, the first scratchy skin of his cheek, and I feel a mother-animal sense of satisfaction. Food was our primary connection, and one of our favorite means of communication. Right up there with “ooh,” and “Feeeem.” So I fill him up with his favorite foods: ice cream and today, leftover Ben’s Z-Brayes birthday cake.

The first thing he saidwhen he walked in, was “Max.” I assured him that Max would be here soon. I believe that Nat’s “stim” talk is expressive of what he is observing, thinking, and feeling. I am not making up meaning here. I feel that this is true, and I have seen too many times that he does, indeed understand us even though what comes out of his mouth might be a bit mysterious.

This pleasure I feel around Nat is, of course, not unmixed. Nor do I feel unmixed about my other two sons. There is always worry, guilt, fear, regret woven in little black threads that make up the fabric of our relationships. I don’t mean that the whole blanket is black; it’s mostly deep ruby red, emerald green, azure, etc. All the jewel tones. But there are shadows and hints of other things. That is life. Max is leaving, growing up and away, silent, complex, mysterious. Ben is opening up, expanding, holding onto me in a way that I never thought I’d see. Z-Brayes is only the little fat tip of the melted iceberg.

With Nat, there is a mixture of all of those same things. Autism changes none of that. Yet I still also have a pang of dread when he’s here that I do not have with Max and Ben, a clammy ghost that lives in me and reminds me of the other side, (thank you, NancyBea, for getting me to think, and perhaps challenging my complacency. I mean that. NancyBea is a sharp thinker who keeps me honest, and I just wish she lived closer so that I could debate her more often!), the unpredictable and scary; the fear of not being able to handle his potential frustration with a world that talks way too much, too fast.

Things can change at a moment’s notice, as they did for that poor kid and his family. I do not mean to trivialize their pain or terror, but I do believe that complacency is the hobgoblin of entitled minds. No matter our sophistication, technology, literature, architecture, laws, and access to medicine: life is still red in tooth and claw.

And yet, man is also noble in reason, infinite in faculties, the paragon of animals.

So, the truth is, from both ends of the spectrum of life, you never know. You never know when all this is going to end. You don’t. You can’t live in fear, even when evidence points to reasons for fear. Nor can you live in blissful ignorance. I try to walk the line. Life can really bite you in the ass, and people can really surprise you.

I believe that my feelings and regard of Nat are understood (by him). Therefore whenever I speak about him now, I always try to speak as if he could comment. He has surprised me too many times for me to believe that it’s all just noise to him. You just never know what someone else knows. You never know what’s coming, either.


My God. That article leaves me with a “moment of slithering nausea” as well. I am simply dumbstruck. And terrified.

— added by ASDmomNC on Friday, March 27, 2009 at 7:46 pm

“You just never know what someone else knows. You never know what’s coming, either.” Now that resonates. Now that Mr. Busypants is in Kindergarten and communicating on a whole new level, I’m constantly amazed by what goes on in that mind of his.

— added by Jeannie on Friday, March 27, 2009 at 9:24 pm

I cannot even begin to gather my thoughts on that article. Saying that I “feel bad” for that family, the parents, the young man and his siblings doesn’t even scratch the surface…it is so incredibly sad and painful

— added by Anonymous on Saturday, March 28, 2009 at 8:01 am

I was already in a bad mood and now I am crying. That article was so, so sad.

— added by Donna on Saturday, March 28, 2009 at 11:40 am

That article was incredibly sad. However, I wouldn’t read that article without also reading this one below by the same author. Not sure how to type in the link, but the Finding Fargo article below is an article I keep going back to in order to feel more optimistic about my son who is now fourteen and lives in residential placement.

Life has its ups and downs.

— added by Anonymous on Saturday, March 28, 2009 at 5:01 pm

Exactly. Thank you for posting that. Her life is horrible right now, but that doesn’t mean it will always be, and I don’t believe such a regression is at all typical of co-morbid aspects of autism.

— added by Susan Senator on Saturday, March 28, 2009 at 5:05 pm

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