Q15: Life With Charley – Freezing with a Chance of Charley

This is one of my favorite chapters! First, Sherry explains how SLOW life with someone who has Down syndrome can be:

Individuals with Down syndrome cease to function when others are upset. Here’s the low-down on the slow-down. Want movement? Then switch on a happy face. But just turn on a frown, and the “could” becomes a “won’t.” That’s when we’ve exhausted our efforts only to get the pleasure of waiting. And then, waiting some more. We’ve known this for years, but oh how we forget when we need to remember the most. Charley has no fast-forward button. This isn’t unusual for people with Down syndrome. According to the authors of Mental Wellness in Adults with Down Syndrome, it is quite common: “Sometimes when adults with DS are pushed too far, they respond by shutting down (what some families call a “meltdown”).” Pp. 206-207

Does your child take for-ev-er to do some things?  Have you adjusted your own internal clock to match his/hers?  Have you noticed that trying to get them to go faster only slows them down more?

Then, she shows how humor is necessary in dealing with life’s little adventures.

“F-f-freez-ing,” he says, looking around. “Where my coat?” he says.

“Did you try the ground outside?”

“No,” 

“Did you try the bushes?

“No.”

“Under your bed with all the cobwebs?”

“Stop it, Mom.”

“How about behind the couch?”

“Come on, Sherry,” he says.

“Whatever you do, don’t look in the closet,” I say.

“Let’s go,” says Brad.

Charley walks over to the closet, peers in, and takes the jacket off the hanger. “I weddy now,” he says.

I look over at the ottoman—sure enough, dangling half on and half off are the jeans he used the day before to keep warm.

“And now for an in-service in jacket-wearing,” I say, holding up the jeans, and placing them on my shoulders. “Then, you wrap your pants like so.” I proceed out onto the front stoop.

He’s right behind me. 

I turn around and face him. “Wait a minute, I don’t want these. Let’s see now, where shall I throw them? In Mom’s face? In the shrubs?”He knows I’m mocking him, and he laughs out loud, flings his jacket over his shoulder, and follows me down the steps. Pp. 212-213

Do you and your child have fun “picking” at each other like the Palmers?  It’s a delicate balance knowing when humor will be accepted and when it can backfire.  How would you explain this to someone outside of our community who might think it’s wrong to tease our kids?  (or would you bother?)