Thursday, April 7, 2011

'We are still you and me'

We are graced today with an exquisite essay from Susan Senator (second left), author of Making Peace with Autism and The Autism Mom's Survival Guide. From left are sons Nat, Max and Ben and husband Ned.

Here are a few of my favourite posts on Susan's blog: Autism helps me get over myself, Look behind the lack of language and Group home proposal, in brief. Thanks Susan! Louise

'We are still you and me'
By Susan Senator

On a recent weekend, I watched the 1980s sci-fi thriller War Games with my family. This was a movie I'd never seen, but one that we five could all agree on. My family of software engineer husband Ned and three sons has so many variables it's a strange common denominator indeed that links us together: geeky, high-tech action movies with a hint of relationships to satisfy the mom.

Our weekends go something like this: My severely autistic son Nat comes home from his residential school, and I, of course, am happy to see him. I kiss his rough oily face and marvel at his size and presence. He stomps and stomps around – one of his autism-related calming behaviors – and it's all very endearing, even to the point of calling it "Joyful House Stompies."

On this particular weekend, like most, I noticed a day later that the House Stompies were not so Joyful. They were just loud. (Nat is 21 and though developmentally delayed, physically he is right on time.) Nat was everywhere: running up the back stairs, to the third floor, down, then down the front staircase and into the kitchen (we live in a quirky, creaky Victorian that matches our family’s personality). In the kitchen, Nat took a look at what I was doing – or not doing, as the case may be, because I'm always disorganized in Nat's eyes, when it comes to making meals. He then made a quick sojourn into the livingroom, to see what the rest were doing. As Nat thrives on routines which give organization to his otherwise chaotic inner world, I knew that I’d better come up with some structured activities immediately, or Nat would escalate.

But, on the weekends, we have our own inner lives, our own desires – Nat included – and orderly plans don't always pan out. Ned decided to take Nat on a walk to the coffee shop to pick up a pound of our favorite beans. Problem was, Ned was suddenly called to help a friend out with something. But he had already told Nat to get ready. I had gotten all psyched to have a quiet house for an hour but now suddenly we were already on Defcon 3 – a term I had learned about from having just watched War Games. Defcon 3 is the level at which Nat already has on his shoes. 'Shoes on' is the final part of the routine before going outside. If we are not ready when he is, Defcon 3 can blow up: 'Houston, we have a problem.'

I could see Nat was escalating. I heard, "Take walk, take walk," increasingly higher in pitch, the stomping even harder (loose old house ceiling fixtures clinking). Think think think Susan. Scared, scared, panic setting in...

But no. I didn’t give in to it. You see, I have learned, in all these tiring years of being Nat’s mom, that our neurons can be retrained. And so I thought to myself: You know what to do.

"Come on Nat," I said. He followed me upstairs. “Come sit with me," I said, sitting on my bed. He sat.

Not a time-out. Just the two of us sitting in a peaceful place. The sun through the lace curtain was soft, etching filigreed gray shadows on the white bedspread. Quiet air lay heavily, reassuringly on our shoulders and against our ears. Nat began sucking his thumb, a good sign. The loud chirps rocketed me back in time, to 1990, to another room, the same bed, my beautiful golden baby next to me, refusing to nap. Oh Nat, I thought. We are still the same. We are still you and me.

"Let's just wait a little bit,” I said softly. “Daddy is almost done talking on the phone. He will come. You will go on your walk. I promise."

Nat exhaled deeply. He had heard me. Not Defcon 3 at all. He’s just my son, after all. My peace was his peace. And so we just sat together.


what beautiful writing and family such handsome sons she has.

This could be any one of us. One day we do it perfectly and it works out and another day we do the same thing and it doesn't. I have learned to accept and on occasion, embrace, the unpredictability. Thank you for articulating the delicate balance between peace and crisis.

Hello Everyone,

Like all of you, I am touched by susan's words, "We are still you and me." For, they also remind me of a children's book, which I read to my nephew, entitled, "LOVE YOU FOREVER". And, in this book, the mother softly sings her son the following lullaby:

I'll love you forever,
I'll like you for always,
As long as I'm living
my baby you'll be.

Matt Kamaratakis

Beautiful. Thank you. Amy Julia

That was perfectly beautiful. Thank you, Louise, for posting it and thank you, Susan, for your wisdom and peace and ability to articulate it.

I hear echoes of my life in yours, and you made me smile softly. Beautiful words and wonderful to read.