ANYWAY,
Why do I refer to Elise as "non-verbal"?
I mean, to be honest, she has a reasonably extensive vocabulary. She CERTAINLY doesn't hesitate to speak her mind. So bare-bones technically, she is not non-verbal.
But. Between her lack of age-appropriate language, her lack of clarity, and her weird pronunciation issues, she is desperately difficult to understand.
Take for example, instead of the typical mispronunciation of "W" for "R", she subs in "L". The "bloun house" instead of the "brown house" (her identification of where we live, we moved from "blue house"). Or more interestingly, "HLella" instead of "Netta" (her grandmother). She uses a "Gah" followed by a complex tongue roll instead of "Grandmama"(her other grandmother). And the list is pretty extended for the subs, drops, and rearrangement and "pig latin"-ing of sounds. Some of this is based on the low muscle tone thanks to the Down Syndrome, but much of it is more a processing issue, than a physiological one. Her brain is not processing sounds in or out properly.
She has a vocabulary of a 2-3 year old. (She'll be 11 in a week.)
She has happily added to her ability to offer different one word options, if you don't understand one, she'll offer synonyms or subject sibling-ish words or sign or enactment gestures, hoping to queue in a useful piece of information that will help you to make sense of her subject. I have affectionately referred to her new speech crutch as "the bastard child of Taboo and Charades."
She literally did not speech until she was almost 2. Like at all.
This is the area of life that is functionally the lowest.
If you don't know her, it is unlikely that you will be able to figure out ANY of what she is saying unless you know a toddler and even then it will be minimal.
If you do know her, it is unlikely that you will be able to understand her, unless you know her subject matter going in, or you are willing to play her speech game.
SO. I will explain her to friends or those in the medical profession. I usually gauge how much to volunteer or just call it non-verbal to avoid the looks of panic that surge when someone tries to talk to her and they understand nothing.
It's kind of like telling someone that this is English, and then sitting back:
It's kind of mean, and not particularly helpful.
So. Consider that Elise has something to say. But know you will have to meet her on her own terms and in her own language to discover her world. It's seriously fun.
Elise has renamed one of her para-pro's at school...and it has stuck, and not just for Elise. The entire class and many others throughout the school refers to her as such and she loves it! Ms. Gonzalez is "Goddess". Wouldn't you accept that name change?? Isn't it worth the upgrade to understand her?? :)
Please, call me Ms. Goddess.... Lots of great communication devices now with the iPod/Pad. Has the speech/pathologist told you about these? Living with 3 kids with DS here in Ohio:)
ReplyDeleteDoes she have speech apraxia? Masha has it and although she is a huge talker, she is very hard to understand. Kimani is non-verbal in the way you talk about in this post, and I love how you explain that you need to get into her world, her language because that is so true.
ReplyDeleteGoddess? Yeah, I'd take that upgrade ;-)