Susan's Blog

Tuesday, April 18, 2006

Ziese Neshuma(s)

Here’s why autism does not rule my life: because Nat is a ziese neshuma, Yiddish for sweet soul. We have enough going on that the autism doesn’t jump out and seize me by the throat, the way it used to. Or I should say, the behaviors Nat exhibited due to autism, due to our not understanding his needs. We have enough going on, good and bad, Ned, Sue, Nat, Max, and Ben. Five puzzle pieces that fit together fairly well, some days better than others.

Yesterday I had the day from hell, and by the end of it, I was ready to go to bed at 8:30, two hours before my usual bedtime. Nat and Ben had just finished their showers, and were dancing around getting into pajamas. I got into mine and settled into bed and Ned said, “Really? You’re going to bed now?”

I sniffled, “Yes.”
He got in, too, and lay on his back, extending his arm towards me, his age-old invitation to snuggle. I told him why I was sad and he listened, offering advice or sympathy now and then.

Suddenly Nat walked into our room.
“Nat!” Ned greeted him enthusiastically.
“Hi, Sweet Guy,” I said, less so. What did Nat want? He did not usually come into our room. He usually waitied in his room, until someone remembered to come and kiss him good night.
“Yes,” he said, as always.
“Natty, come lie down with me,” Ned said.
“Yes.” Nat, so literal and physically awkward, threw his long bony frame right on top of Ned, making him gasp for air and laugh. “No, Natty, over here.” He made room for Nat, and Nat laid his head on Ned’s chest, his face just a few inches from mine.

“Oh, it’s the Original Three,” I said softly, tearing up from remembering lying in bed with Ned and baby Nat. One time, I tried to nap with little Nat right in the bed with me and we couldn’t because every few moments he would raise his head and see me there with my eyes closed and he would laugh his baby laugh at me. Oh my God, did that really happen? If that happened, then why was I ever sad about him? Why did it matter that we had some label to go with some of what he did? Why did I let that define him back then?

Oh well. Enough ass-kicking for today.

I extended my hand and stroked Nat’s cheek, still soft because he doesn’t shave yet (the long hairs on his face are white blond so he doesn’t quite have to). I pushed my hand under his face — his skin felt clammy and alive — and left it there, and he let me.

Why was he there? I think he was there because he knew I needed him. Like his father. Here we are at the NAAR Walk for Autism.


moved to tears…your honesty is what i first loved about you and your writting and to hell with people who can’t be honest with each other and themselves…I had a rough day with sam today, as he is on vacation from treatment and I forgot that age old lesson..not to let the behavior define who your kid is…..Sam is more preceptive than the average adult to what others are feeling..I am sure nat can feel you….you also struck a cord with me (sniffle, wipe) when you revisited your family as the original three…Sometimes i get so caught up in the trials, behaviors and safety issues that i forget how sweet he was, when he was him without the label…….and we were just the parents of a child wihtout developmental issues…another brilliant tonight knowing that you at least touched someone with your experience

— added by Kristen on Tuesday, April 18, 2006 at 9:15 pm

That’s the best. 🙂

— added by Autism Diva on Tuesday, April 18, 2006 at 10:20 pm

Susan, you have touched me much in what matters most.

Your whole family are sweet souls.

I think there is a sweet soul in us all.

— added by Bronwyn G on Wednesday, April 19, 2006 at 12:55 am

I’ve read this several times today and it makes me cry every time. I love reading about all of your sons, and especially Nat.

Many of the blogs I read seem to be about younger ASD kids. It’s nice to get a glimpse of what my sweet son (now 6) may be like as he grows.

Also, my brothers and I were huge Star Wars fans the first time around. What we wouldn’t have given to make robes and film a Star Wars sequel. You are an awesome mom.

— added by gretchen on Thursday, April 20, 2006 at 4:58 pm

Ziese neshumas — Yes.

— Phil

PS: A propos the photo at the NAAR walk — a few years ago I had dinner one evening with Margaret Bauman, and I asked her about the feasibility of establishing serious discourse with the leadership of NAAR and other organizations about what they really think they mean by “cure”, and how we could bridge the stark disconnect between the established autism organizations professing “cure” as a goal, and the community of folks on the spectrum who are thoroughly alienated by the notion that they need to be “cured” (however much they may seek mitigation of the specific obstacles in their lives — which is not the same thing and not a contradiction in terms). Dr. Bauman thought that the leadership of NAAR, among all the organizations we identified, might be most amenable to establishing such a discourse. We never did get to next steps with the idea — making the necessary inquiries and introductions quickly fell off her (very busy) radar, and I had other priorities demanding my attention as well. But I wonder if there are other avenues to establishing such contacts? It seems to me to be such a waste, for the stated goals of the major established autism organizations to be as thoroughly alienating to so many of the adults in the population these organizations claim to serve. If there is a way of hashing out the semantics of the situation, and repairing the disconnect, isn’t it worth trying to find? Dave Spicer, among autistic self-advocates, seems to think so (see; I do too.

— added by Phil Schwarz on Monday, April 24, 2006 at 12:27 am

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