Susan's Blog

Thursday, January 16, 2014

What if Nat Woke Up, Cured?

I wrote this more than ten years ago, and it can be found in my first book, Making Peace With Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts. (Trumpeter/Shambhala 2005 and 2006)  I am posting it today because it still rings true for me, more or less.


From Making Peace With Autism, Epilogue:

I still find myself wondering, during my dark times, What if Nat woke up one morning to find that he wasn’t autistic any longer? I see us all, gathered around his bed, the site of the miracle, eagerly listening to his every word. He speaks so clearly now, in full, effortless sentences. At last, we understand everything. It’s as if he has woken up from a coma, or a deep, enchanted sleep. He will have to catch up for all the lost time.

We tell him, “And then you did . . . .Why was that?”  We have so many questions for him, as he does for us. And now he can tell us all his secrets: “Oh, I hated it when you would try to make me talk to you.”
“Because your words came at me too fast. If anything else was going on, I couldn’t pay attention to whatever you were saying to me. The noise in a room overpowered everything else.”
“What were you saying with the silly talk? What was ‘Feem–sh?’”
“‘Feem’ just made me feel good. It was my word. Because you didn’t know what it meant, you couldn’t talk to me about it or make me talk about it. And ‘ssh’was just that,‘ssh.’ I loved the feel of ‘ssh.’ I loved when people got quiet.”
“Why did you hit? Why did you pinch?”
“I don’t know. I think that with the pinching,my fingers got carried away. It feels good to squeeze. And once I hit, it’s hard to stop.”

And then I have to ask the most important question, “Do you love us?”
“Yeah, but it’s hard understanding all of your emotions.You can laugh, then cry, then sing, all in the same hour. How can
you change moods so fast?”
“Maybe now you’ll see,”Ned says.“What do you want to do now, Nat?”
“I want to meet some girls.”

I wish for a miracle like this so badly that when I really think about it, I can barely breathe. So I close my eyes and let it pass through me. And the more I think about it, the more I come to realize that there are not many fifteen-year-old boys, autistic or not, who actually talk that way to their mothers. Anyway, I do know Nat. I know why he does what he does, the “feem,” the pinching, all of it. All in all, as my father once said, he’s still our Nat.

So I drop my miracle fantasy and open my eyes and go looking for him. There he is, pacing back and forth, living room, hallway, dining room,waiting for his video to rewind, his loud steps reverberating through the house, his hand opening and closing in time with the cadence of his soft silly talk. He notices me immediately, but he keeps moving, probably hoping I will not disturb his comfortable rhythm.
“Hold it, Nat,” I say, stopping him between rooms.
He turns and fixes on me with his wide blue eyes, waiting, silent now. He’s taller than I am these days, but his hair is still bright blond, the same as it was when he was a baby. I say,“I just want a hug.”

Immediately, he leans in toward me, “OK, yes,” he says, so softly it is almost imperceptible.

I kiss his cheek and breathe him in. His long arms are gingerly draped around me, bony and warm.We stand together for a moment, just like that, and my pain recedes, carried away with the tide.


And why are there no comments to this post?! Precious. I am right where you were and are today. I vacillate through denial, anger, acceptance, (a smidgen of gratitude), and negotiation with myself, with God. It seems to go in a pattern. When my son is doing well, it’s easy to be grateful and accepting. When he is grinding his gears through life, I do the same. I find myself wondering, “Who is acting like the toddler here?”

— added by Susan Anderson on Thursday, January 16, 2014 at 3:13 pm

I just re-read Making Peace this past weekend. I was having a low point and just needed some encouragement. Love that book.

— added by Suzette on Thursday, January 16, 2014 at 4:02 pm

Just as beautiful now as when I first read it almost ten years ago, and it gave me hope. Thanks for this!

— added by Kim McCafferty on Friday, January 17, 2014 at 11:50 am

I’ve thought this about my own son many times. This is my fantasy moment: There is suddenly a complete cure for autism. Researchers find a magic pill and “poof” it’s gone. And the sweetest thing of all happens: I get to have long, long conversations with my son. We talk and talk. I get to know him, all his thoughts, feelings, likes and dislikes, etc. We talk for days and all the things he has thought and felt, what opinions he has, etc. these past seventeen years come spilling out. And then another thing happens: He starts reading books, not just kindergarten and first grade readers he struggles with now, but all the wonderful books out there. After that, he hops on his mountain bike and rides for hours. He rides a bike! Ah, if only.

— added by Sharon Jones on Thursday, January 30, 2014 at 1:26 pm

Susan, Thank you for this beautiful post. I needed this today. I went in search of a blog for parents of sutistic kids. So happy to see that you have a blog! Your book, Making Peace with Autism, was the first book I purchased back when our son was diagnosed with autism. I,too, have 3 boys. Our middle son is the one with ASD. I cannot tell you the guilt that I feel thinking that I wish he could wake up and be “cured” someday. The gifts we receive though as a parent of a child with ASD are a blessing, although it is hard to see at times. I am going to go ask my son for a hug…

— added by Kerry Ann on Sunday, February 2, 2014 at 10:03 am