Tuesday, May 19, 2015

Apraxia of Speech and Down Syndrome

Apraxia of Speech is a disorder that makes it difficult to plan, coordinate, and make speech sounds. Some children with Down syndrome have apraxia, but not all of them do. It has been a concern of mine from day one. Levi has a hard time imitating sounds and speech. He often just makes a "k" sound for whatever he wants and has done this or a "g" sound since he was a year old. His lack of progress concerned me, and we've been talking with his speech therapists about it. He sees a SLP (Speech and Language Pathologist) at school and also has speech therapy with a different SLP outside of school once a week.

I recently met with Dr. Jane Kleinert, an award-winning expert on Down syndrome and apraxia at the University of Kentucky. She said a hallmark of apraxia is that traditional therapies aren't successful. We try and try to get him to imitate the sounds we make, and while sometimes he can, he is not exactly ready for that stage of speech development yet. An infant will make sounds and babble before being able to put those sounds into words, and infants initiate those sounds and babble by themselves without being told what sounds to make. We have to encourage Levi to do that through play to get him more ready for imitation and to make typical speech therapy practices more effective. Once we can help him build these foundational language skills, the other things we are doing should be more effective.

Levi does say some words when we tell him to, but the sounds Levi makes on his own are "wow" and "yay" and other exclamations, many of which are related to our play times at home. After talking with Dr. Kleinert, it made sense to me that Levi calls me "Yay" instead of "Mama." I try to get him to imitate me saying "mama" and he can when I work intensively with him, but it is not something he does on his own. He pats me and says "Yay." He points at family photos or to each of us at home and says, "DeeDee" for Daddy, "Bubba" for Adam, and "Yay" for me. Without fail, he always calls me "Yay." Now, I have some understanding of why and how to get him to move forward. It is because this sound is one he learned to initiate on his own, and he learned to do so through play. If we can get him to initiate other sounds on his own, he will be better able to talk without working so hard.

Another support we are adding for Levi is an iPad mini that he will use only for communication. This will not take the place of talking or discourage him from using his own voice. Like sign-language, it will be his voice until he is able to speak more on his own, and it encourages communication. The app we have chosen is called "Speak for Yourself." It is similar to the "Proloquo2Go" app. Click here to see it's features. Levi's speech pathologist at school has been working with him at school, and we use it at home. To start with, we have very few words on each screen to choose from. We can add more as Levi (and us adults) get more familiar with where the words are located.

He isn't always interested in using it, and can get frustrated. I also am learning, so we are only in the beginning stages. I admit, I need to devote more time to using the app with him, but I am so thankful for the understanding I've gained over the past several months, and pray that we can help support him so he can make more progress in this area.

Here's a short video showing some of Levi's speech difficulties, some of his strengths, and how he is using the "Speak for Yourself" app.