Myth: Individuals who do not speak have no words because no one made them talk or they don't want to talk. Individuals who can't talk don't have anything to communicate.
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.
Even though the vast majority of people with Down syndrome are able to verbally communicate, my daughter struggles in this area.
Jaycee was considered non-verbal for many years. I now consider her minimally verbal at age 10. She says about 20 or words clearly now and attempts many more words. Most of her communication is with sign language and her communication device. She has difficulty with verbal speech due to childhood apraxia of speech, which can be associated with Down syndrome (see my post from Oct. 2, 2016 for more information).
Other individuals 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 have lessened as Jaycee has gotten older. When she was younger, it seemed like my husband and I were seen as partially to blame for her lack of speech.
Lack of verbal speech is not a result of no one 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. Jaycee got to the point where she shut down when asked to say a word; she recognized speaking was very hard for her. 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, which she uses to request, name, and ask questions. Sometimes, this misleads people. 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. Communicating with your hands and your mouth are two different things.
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.
This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!
This was eye-opening for me. I didn't know some kids with Down Syndrome were unable to speak (or had limited communication skills). Thanks for enlightening me.
ReplyDeleteAs far as what people say, until they walk in your shoes, I think they should recognize, that as a mother, you are doing the best you can and have likely tried EVERYTHING! Good post.