Q16: Life With Charley – The Look

In this chapter, Sherry unveils a part of herself – she’s brutally honest about her feelings and how the world responds to her and her family.

One church selection committee just sat and stared at Charley while they were talking to us. I’m not sure they even looked at us one time. I wanted to wave my hands in the air and say, “We’re over here,” but thought better of it. Now, mind you, we think he’s lovable, but it’s amazing how uncomfortable people can be with those who are different, including people like Brad and me who are, shall we say, a bit more endowed than some. That’s why when we interview we’ve learned to brace ourselves for what we call the “Fat Look.” P. 222

There has been a lot written about whether special needs children are welcomed in church communities.  Have you had good / bad experiences?

We are what we are, and all the dieting in the world isn’t going to change the fact that interviewing is the pits. We are forever at the mercy of whether people like us or not, and whether or not we like them. It’s agony to put yourself out there. To hope that what you have to offer is enough. To hope others will see the value in you. To hope others will be able to look past the surface because when it comes down to it, you don’t want to come away from the interview knowing you’ve gotten The Look. P. 231

 

She talks about how strangers sometimes react to Charley:

Charley often experiences The Look in a different way. We have seen it when we’re in the community, at the movie theatre, and in restaurants. It’s a look that means, “I’m glad that’s not my kid.” He gets this look when people are either curious about his Down syndrome, or when they aren’t quite sure what to do about him, like when he plants himself on the floor of the waiting room in the doctor’s office.  P.232

Have you experienced “The Look?”  What do you do / how do you respond?

Another thing this chapter shows is the way adults who have Down syndrome often understand more than we give them credit for.

Meanwhile, Charley refused to get out of the car. “I NOT goween,” he said.

“Okay,” I said, “But Dad will be disappointed.”

“Dis-no-my-shursh.” 

“We are just visiting, son.” 

“No not.” 

“Don’t you want to hear Dad’s sermon?” The back seat became eerily quiet. Then, just when I thought I might have to do all the talking, he chimed in.

“I love Diyonne (Dianne). I love Chain (Jane). I love Wonalt (Ronald). I love Woof (Ruth). I love Mr. Bailey. I love Camwun (Cameron),” he said.

I knew he sensed something was up. He’s been through this interview process before and was naming off his friends from school and our church back home. His way of saying, I’m not moving, and you can’t make me. I know how he feels. I looked in the rearview mirror. His eyes were wet.  Pp. 255-256

Have you, or someone close to you, ever underestimated your child, only to find out that he/she really did know what was going on?

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