Tuesday, November 1, 2005

She Gets the Worm

Original: http://www.ascentschool.org/SHE_GETS_THE_WORMstory.pdf

She Gets the Worm
By Terri Manzione

I tiptoed downstairs, turned on the stove top burner and switched on my computer. The small numbers on the bottom right announced it was 5:02 am. My fingers rested on the keyboard until I found the strength to type.

"Nancy –

Last night Stuey asked for cookies. He ate too much at a Valentine party, so I said he’d have to wait until tomorrow. As I walked away I heard a thud, and then another. When I turned, I saw Stuey banging his head on the kitchen table…"

I ran to the kettle before the explosion of steam woke the house. My cold hands hugged the oversized tea mug as I returned to my computer.

"….I need your help. When is a good time to call?"

Nancy stirred Splenda into her coffee as her computer chimed, announcing my email. The screen’s glass reflected dark half moons beneath her eyes, badges of love for her children. Dr. Nancy Shamow is the director of Ascent, a school that educates twenty-four children with autism.

"What did you do when you saw him banging his head?" she replied at 5:16.

"I ran to him, held him until he stopped." Tears fell onto the keyboard.

"Can you and Stu meet me at my office today at 3pm?"

Nancy, Stu and I surrounded a small coffee table and discussed Stuey’s new behavior.

"There are two things you must do. The first is very difficult, but crucial. When Stuey engages in self-injurious behavior, you cannot react. Don’t touch him, don’t say anything. Your reaction will reinforce the behavior and it will worsen. If you ignore it, it will increase at first, but then it will stop."

"How can we ignore it? I can’t watch him hurt himself."

"He’s not going to hurt himself. When he hit his head on the table last night, did it leave a mark?"

"Stuey’s never been aggressive. He doesn’t want to hurt himself, he’s just acting on frustration. He didn’t understand when you told him to wait until tomorrow," Nancy explained.

"I wish there was a way we could teach Stuey the meaning of ‘wait.’" He’s never understood the concept," Stu interjected.

"There is a way. The second thing you’re going to do is set up a picture schedule at home. We’ll create pictures of everything in his day, and his week, so he can see what’s coming next. If he can’t have cookies at bedtime, he’ll see on the schedule he can have cookies with lunch tomorrow."

With endless meetings and midnight emails we created picture boards of everything in Stuey’s world. Nancy coached us through preparing, presenting and explaining the picture system to Stuey.

As I cooked dinner I heard the thud. Stuey was hitting his head on the kitchen table, unwilling to wait for the chicken roasting in the oven. I lunged toward him. I wanted to grab him, kiss him, beg him not to hurt himself, but Nancy’s words resounded. I spun around, pulling in my hands to cover my face, praying for the end of this daymare.

I waited until he stopped and placed his picture board on the table, pointing to a puzzle and to a picture of chicken dinner, explaining what he had to do. He walked to the basement. I heard the puzzle pieces scatter across his desk.

I sat on his warm seat at the kitchen table, leaned forward, and hit my head three times on the yellow oak, careful to use the same force as my son. Nancy was right. It stung, but left no mark.
After dinner I checked my emails.

"Didn’t hear from you today. How is Stuey?"

I responded and related Stuey’s behavior, but not mine.

"Good work. I know this is hard, but it will get better. I want you to write me every day until the behavior is extinguished."

I woke to the sound of birds frolicking in the rising April sun. I tiptoed downstairs, turned on the burner and the computer.

"Nancy –

Today marks three weeks since Stuey engaged in self-injurious behavior…"

"Terri – Wonderful. No longer a need to write every day. I’m here if you need me. Let me know right away if the behavior returns."

The bottom right corner of the computer blinked 6:15 am.

November, 2005