Sunday, October 7, 2012

Communication breakthrough!

BIG NEWS!!! Something wonderful happened this weekend. Caroline is beginning to express "yes" and "no" with switches and cards!

While working with Linda Burkhart on the PODD communication system, Caroline made her own choices for the first time! And she was so happy and proud of herself. She had this look on her face like "you finally understand what I'm trying to say!"

We've been modeling the PODD system (albeit inconsistently) since our July PODD training with Linda and Gayle Porter. We've also been working with Caroline on the head movements for "yes" and "no." We just didn't realize that she actually understood the meaning of these abstract concepts. For "yes," she tilts her chin down towards the "yes" switch (or green "happy face" card since we use both--see pictures below). For "no," she turns to her LEFT side towards the "no" switch. (note: Rett Syndrome causes Caroline to have involuntary movements, including shaking her head from side to side. This movement looks like "no," which can be confusing. Hence, her "no" is just one turn to her left side towards the "no" card.)

We feel so blessed to have worked with Linda. Not only is she an Augmentative Communication Specialist ROCK STAR, but she also "gets" our girls. She believes in them and knows their true cognitive capability. Caroline's ability to express "yes" and "no" will change her entire world (and ours too!).

For more information on Linda, please visit . Also, please click here for a link to a short document explaining how apraxia affects communications in girls with Rett Syndrome.

A video of Caroline making choices (for the first time!) while eating. It's important to give her a least 3 choices and also "none of these" as the 4th choice. (This video was taken by Linda)

Here's Caroline "babbling" for the first time (with PODD). She eventually says that she wants more apple sauce! (This video was taken by Linda)

Caroline and Linda Burkhart (Pictures by Soojung!)

Our "yes" and "no" switches (Linda taught me how to put them together)

We also use our "yes" and "no" face cards. The point is to get Caroline to learn the movements to express these choices. 

My own personal accomplishment this weekend was running a 10K in 58:32 (9:26/mile). I ran with my Rett mom friends Doris and Soojung!