Two life-changing words

Yes. No.
Those two words are changing Caroline's world!

Last December, I wrote about longing to hear Caroline's "voice" (please click here for the post). I remember being heartbroken, but hopeful. We always knew Caroline understood what she heard. Yet unlocking her voice seemed so daunting and overwhelming. Apraxia basically traps Caroline in her own body. It prevents her from forming words and using her hands to point. Her only tool for communication is her eye gaze.

This past month, we experienced a major milestone. Caroline started indicating "yes" and "no." For a while, we were encouraging her to use head movements (please click here for more detail). We soon found that the motor planning involved (not to mention Caroline's involuntary movements!) was adding yet another obstacle to an already challenging task. She would often get frustrated. It was also difficult for us to distinguish between a "real" head tilt and an involuntary movement. We decided to rely on one of her strengths instead: her eye gaze.

Caroline's newfound ability to make choices has marked a real turning point in our lives. She seems less frustrated. She has higher expectations! She gets excited when she's able to tell us what she needs...and she yells at us when we can't figure it out! Ideally, we should aim to give Caroline two choices with "something else" as a third choice. This method allows Caroline to truly express her needs. It also lays the foundation needed for her to use the PODD communication system expressively. But reality isn't always ideal. Sometimes, we just ask her to chose directly between two items in front of her. This method is much more limiting, as it prevents her from expressing a need that may be completely different than the choices presented to her. But I may only have two snacks available. Or I may not want to offer "rocking" as option because she's just had something to eat and may end up throwing up (a common problem for us). We're doing what we can. And Caroline now gets to enjoy choosing activities, snacks, videos, toys, and even who she wants to hang out with!

Our next goal is to help Caroline tell us what's wrong when she's upset. When she's crying, she obviously has very little patience for using "yes" and "no." And yet these are the times when I most need her to be able to communicate her needs. I feel so helpless. Eventually, another big goal is to have her communicate in a more autonomous way. I'd love for her to tell me what's on her mind, as opposed to have me guide her into a specific topic. This is where PODD comes in. We hope Caroline will start using this communication system expressively soon.

This development was the result of a team effort. I want to thank Megan (Caroline's speech and language pathologist), Linda Burkhart, her school teacher and speech therapist, and everybody who believes in her potential. 

Caroline picking out a snack. 

Caroline choosing an activity. 

This is our home-made eye gaze board. Right now, it enables Caroline to use her eyes to communicate "yes," "no," and "I want."  The board is also training Caroline to eventually apply the same method of communication to an eye-gaze computer. 

Outside our home, we use the "yes" and "no" switches we made. We hold them up at a similar distance as the images on the eye gaze board.

We use laminated pictures to facilitate choice-making. Have I mentioned how much I love laminating? 

We are still in the modeling phase of PODD . We're currently reinforcing the meaning of the images in the first few pages of the book by showing them to Caroline when we use key words (we plan on gradually shifting to only using the book in the next few weeks).  

Here's a video of Caroline and I chatting and playing. (warning: this video is almost 8 minutes long!)