Monday, October 20, 2014

31 for 21: Busting Non-verbal Myths

Blogging 31 days for Trisomy 21 continues with myth busters Monday:

Myth: Individuals with no verbal speech have none because no one made them talk or they don't want to talk. Individuals who can't talk don't have anything to communicate anyway.

Fact: There is a reason why individuals have no or little verbal speech. It is not a result of someone not trying hard enough. Also, a lack of speech also does not indicate a lack of desire to communicate.

My daughter is essentially non-verbal. She says about 15 words now, so she does have a few basic words. She has difficulty with verbal speech due to childhood apraxia of speech.  Others who are non-verbal may have difficulty due to a brain injury, stroke,  profound intellectual disability, or muscle weakness in the face to name a few. In short, understand that if someone doesn't speak (other than the rare selective mutism) there is a medical or developmental reason for it. This is true for those with Down syndrome and those without.

Outsiders don't understand why my daughter doesn't speak. I have heard comments like:
-She could talk if she really wanted to.
-I guess everyone talks for her, so she doesn't have to speak.
-No one is making her talk, otherwise she would be talking.
-She has nothing to talk about or she would talk.
-If she can sign so well, she should be able to talk.

These comments are no longer hurtful to me but they frustrate me. Jaycee's lack of verbal speech is not a result of not trying. When Jaycee was younger, I spent hours with her at home practicing sounds in isolation, working through the Kaufman praxis words, and encouraging her to use vowel approximations of words (i.e. "ee" for eat). Besides all this, Jaycee got official speech therapy at school. The result was basically no progress in verbal speech, and we were both frustrated. While I don't ask her to say too much anymore; it is not the main reason she doesn't speak. She doesn't speak because her mouth and brain can't work together to form the sounds like I can. It's her body's fault and no one else's.

Even though Jaycee doesn't have much verbal speech, she has much to communicate about. She has hundreds of signs. Just because someone can sign, doesn't mean that they can speak. Signing involves being able to make a hand position/motion and recalling what that position/motion means. If someone has apraxia, it doesn't mean they can't learn sign. They are two different skills.

Jaycee also uses her communication device to talk about things a variety of subjects. Jaycee has emotions, thoughts, preferences, opinions, and wants that she talks about. I know Jaycee is not alone in this. Just because someone doesn't have the ability to speak, it doesn't mean that they have no communication.

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