Wednesday, March 5, 2014

"Do you talk?"

From time to time, Jaycee is around a new group of children who don't know her. I am amazed that the primary characteristic they pick up on is Jaycee's lack of verbal speech.

Several months ago, I took Jaycee to her brother's school orientation. Jaycee was previously in this pre-school class, so she took her seat on the floor with all the other children while the teacher gave her short speech. I was listening to the teacher but watching Jaycee nestled in between younger children she didn't know.

Jaycee was smiling and babbled happily, "Ba ba ba," as she often does. One of the pre-school children said, "Do you talk?" Jaycee replied with a smile. The pre-school student looks at the child next to him and says, "I don't think she can talk." There was a brief discussion between the two of them about her speech or lack there of.

I wasn't bothered by this exchange and other similar situations. The truth is that she can't talk very much. Sometimes a child will ask me why she can't talk. I try to explain it like this: Jaycee can say a few words like mama. But speaking is hard for her. Her mouth doesn't work like yours or mine. But she does know lots of sign language and uses her device to talk with me. She's really smart!

I think questioning why an 8 year old doesn't speak is a valid question. Explaining the interactions between muscle weakness from Down syndrome and muscle incoordination from childhood apraxia of speech is complicated.  But, I try to focus on what she can do and place a positive remark in their minds.

Oddly enough, Elijah's brother (age 4) hardly ever brings up Jaycee's differences. He has grown up with his sissy being a certain way. I don't believe he knows any better. A few nights ago, he made a strange comment, "Sissy hasn't said her first word yet."

I don't know where he got that idea or the phrase "first word" but I corrected him.

"Sissy has words, just not many. You know she says things like bubby, mama, dada, and bye bye."

That satisfied Elijah. He was gone with no more questions about Jaycee's vocabulary size. I was left wondering just what he was thinking about. I guess he's finally noticing Jaycee's speech and language isn't "typical" but maybe doesn't know how to ask the right question.

Whatever the case, I will be here ready to answer questions, defending Jaycee, providing insight for little minds, and helping children see her strengths.

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