Monday, November 8, 2010

A Labor of Language (and Love)

Language and having Agenesis of the Corpus Callosum
can produce a variety of challenges when it comes to

I have wanted to include more information here about
the different types of speech and language issues that
some people deal with who have ACC.

Recently the parent of a 13-year-old child with
Agenesis of the Corpus Callosum shared a true story
snippet of insight in an ACC support group. With
permission from the parent, I am able to share it
here with you.

I love how the parent spells out the struggle and makes
it come to life by telling an actual conversation which
provides a glimpse inside the world of what it's like
to not only be the person with ACC and struggle with
words, but also what it's like to be on the reciprocal
side, trying to figure it out and piece it together.

The parent is replying to another parent and writes:

Celeste (13 cACC) was a vowel talker too! I used to say she
did not ever babble. No mamamma, babababa, dadadada. Nope!
But she wasn't quiet, she just made very loud vowel sounds.
Great to hear someone else had the same experience. Celeste
is 13 now and still is not one of great words. She is not
quiet, she is just not a great communicator.

Celeste still looses words. Words she completely knows but
when talking often just forgets them. Just yesterday for

Celeste: "Mom, can I have one of those things?"
Me: "What things?"
Celeste: "you know, the uh, um, thing"

Now mind you she is giving me some sign with her hand but I
had no idea what she was saying.

Me: "Do you eat it?"
Celeste: "Yes, mom! A, um, um, you know, um I ate it."
Me: "You ate it when?"

Now she is getting frustrated so she really cannot communicate.

Celeste: "UGH! Mom, come on. I just want a thingy. You know. From the fridge."

Oh, yeah, now THAT narrows it down!

Me: "Do you cook it?"
Celeste: "Yes in the microwave."
Me: "Is it big or little?"

Of course this is a stupid question so now she is mad.

Celeste: "MOM! A thingy. You heated it up yesterday and I ate it. For breakfast yesterday"
Me: "Ohhhh, a muffin?"
Celeste: "Ah, muffin, yeah, that's it."

"We have many many conversations like this."

The parent went on to tell me...

"Some words she has "lost" in mid conversation....Refrigerator,
broccoli, muffin, pencil. The list goes on and on. It is never
a word that is unusual and it is a word she may have just said.
Crazy! There are times I feel like I live one giant charade game!"

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