Wednesday, October 31, 2012

Update on potty training

Since the last time I posted about Caroline's progress with potty training, she's had one single accident with with "number two" in her diaper (when she got diarrhea once in September). I know this is a strange topic to blog about, but Caroline has Rett Syndrome. This is a HUGE deal!

We are still shocked at how quickly Caroline learned to use the toilet. As soon as she turned 2 1/2, we started training her and that was it. She figured it out in less than a day. Now, she lets us know by rubbing her nose and confirming with her yes/no eye-gaze board. She also knows to "hold it" until we can get her to the nearest bathroom (she actually crosses her legs with quite the force as we rush her to the toilet!). Her school teacher and home nurse also report that she always uses the toilet for bowel movements. Everybody around her is incredibly diligent about picking up the signals. Reaching this goal was a team effort with Caroline leading the charge!

Mike thinks Caroline's success with potty training is due to her eagerness to express understanding of our expectations.

Our girls are smart. They just need us to believe in them.


Tuesday, October 30, 2012

My princess Caroline

Lately, I've been surprised by some of the "typical" stuff that bubbles up in our "non-typical" life. Apparently, Caroline loves dressing up as a princess.

Just to be clear, I'm not pro or against the princess phase. For me, it's just a matter of not knowing what kids are into (at any age!). Caroline is our only child. And we had never really been around young kids before Caroline. So naturally, when it came to picking music and shows for her, we chose what we knew and liked too. This is why Caroline has been exposed to a lot of old school Sesame Street.

We ended up getting the Beauty and the Beast movie because it has a lot of great songs (a must for Caroline to sit through anything!). It was also among the few Disney movies currently out of the vault. To our amazement, Caroline was able to enjoy the movie in its entirety. This is quite an accomplishment considering the length. Caroline has to work extra hard to concentrate and focus. She totally gets into the viewing experience too. She yells when there's a lot of action and she laughs at some of the funny parts. She also gets quiet during the more "serious" parts.

I never imagined Caroline would enjoy dressing up like a princess until the Belle costume caught her attention at Target. I told her "this is the same dress Belle wears in the Beauty and the Beast movie you like so much!" We started walking away from the dress, but my mom and I looked at each other and something told me to just buy it.

We were all surprised by how much she enjoyed wearing the dress. She smiled the entire time she had it on. She cried when we finally took it off.

Caroline loved being Belle. 

Caroline also wore a little lady bug costume. She didn't seem to enjoy it as much. 

Wednesday, October 17, 2012

Caroline's feisty side

I thought we had ducked the "terrible twos" phase with Caroline. seems we are getting some light version of this developmental stage.

Caroline has rarely cried or fussed, even during the worst of her regression last year. But lately, a little bit of feistiness is bubbling up here and there. She yells at us (especially me!) when we can't figure out what she's trying to tell us (like when we put her on the toilet when she needs something completely different). She breaks down in tears when we end an activity she's enjoying (like when we try to keep her from rocking after she's eaten). She does something with even more intensity when we ask her to stop (like when she hits her head really hard against the chair and then watches for our reaction with a huge smirk). Caroline is definitely trying to make it clear to us that she wants some independence. She gets frustrated when she realizes she can't communicate with us. And like most toddlers her age, she gets upset when things don't go her way.

I can't complain though. She's still our sweet Caroline. We just hope this is simply Caroline asserting herself and not some Rett-related thing that's about to get worse. Our gut instinct (wishful thinking?) tells us that we should find some comfort in seeing yet another sign that Caroline is just like most kids her age.

Pictures from this week

Tuesday, October 9, 2012

First time trying an eye-gaze computer

This past week has felt like some kind of miracle to me. We had another major milestone during Caroline's first trial with an eye-gaze computer. She figured out how to use the computer in less than 5 minutes. Mike and I were in awe...just completely amazed. 

Caroline is working with a speech-language pathologist (SLP) on alternative and augmentative communication therapy. I am so thankful that Caroline is working with someone like Megan. She is compassionate, dedicated, and just a pro at what she does. I also appreciate that she immediately got that Caroline was "in there" despite her severe physical impairments. I am well-aware that not everybody believes in our girls' cognitive ability (click here for recent research). My heart breaks for girls who are not surrounded by teachers, therapists, and doctors who believe in them. Caroline must sense that Megan sees beyond her disability. She seems to consistently give Megan her best!

We are in the process of trying out difference eye-gaze computers until we find the right one for Caroline. We started with the DynaVox. I will try and post videos of our experience with other companies as we continue our search.   

I can't wait to hear what Caroline has to say when she's "talking" spontaneously! 

For more information about Caroline's awesome speech therapy place, please visit their website at 

Video of Caroline using the eye-gaze computer for the first time. She quickly figured out that she could communicate that she wanted a toy by looking at the image of the toy! It was BEYOND exciting to watch! 


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!

Wednesday, October 3, 2012

Modeling the PODD communication system

The Pragmatic Organization Dynamic Display (PODD) communication system enables individuals with complex communication needs to have an autonomous voice. (to read more about how we're introducing this system to Caroline, please see click here)

We're still in the "modeling stage." We hope that Caroline will eventually use this system expressively. At this point, Mike and I are each using PODD twice a day for a few minutes. Caroline also takes her PODD book to school for her teacher and therapists to communicate with her.  

Here's a video of me using the PODD book to talk to Caroline (DISCLAIMER: I may be messing up to the point where what I am doing may not even be considered PODD anymore!)