Our first week with the eye gaze computer

Wow. I just need to start by saying...I am incredibly grateful for advancements in technology!!

We've had the computer for 5 days now. Caroline's speech-language pathologist (SLP) is the only reason we have any clue about what to do. Megan is just so patient and so dedicated. More importantly, she listens. She cares about what works for Caroline (and for us too!). This "special needs world" can be terribly overwhelming, confusing, and intimidating for parents. It can certainly be isolating. For many of us, it is often filled with guilt about what we are unable to do and/or what we're doing "wrong." 

We had a bumpy start with just getting to know the computer during the first couple of days. Those first two days were spent learning how to turn on the device and getting to the correct settings (sad, but true). We also had to learn how to calibrate the computer to Caroline's eyes. Positioning Caroline and the computer correctly also took a lot of practice. Once we figured out the basics, Caroline was able to start using the device. 

Learning to use the eye gaze computer is like learning a new language...for all three of us! We decided that the first step to learning this "new language" was making a habit of using the device consistently. We turn it on first thing in the morning. We use it at every meal. And we are slowly incorporating it into other regular activities. The best part is Caroline's enthusiasm. She already knows that when she wants to tell us something (or answer our questions), she needs to look over at the computer to communicate. She then turns back to look at us for a reaction. This is all pretty darn amazing!!! 

Here are some videos from this past week 

(and some from January with the computer we trialed):

We are starting with this basic page. These "main" pages have anywhere from 8 to 166 symbols. Even as Caroline's pages become more complex, the symbols will remain roughly in the same area. For example, the symbol for "stop" will always be around the bottom right part of the page. This enables the user to quickly find the word they want to use.

The computer allows Caroline to gain some control over activities like eating meals. She can now tell us when she's ready for the next bite or when she's had enough. She says "more" and then opens her mouth. She also says "stop" when she hasn't finished swallowing yet. We've noticed that if we don't immediately react to her words, she goes back and says that particular word again. I took this video in the middle of her eating dinner.

Caroline's SLP created a page specifically for "yes" and "no" with the same symbols Caroline has been using for almost a year now. This page was the easiest for Caroline to learn because she's been using yes/no on a daily basis for 7-8 months now. 

Caroline practices using her eyes to target symbols with exercises like the one in this video. When she "catches" Dora with her eyes, the target moves somewhere else on the screen. The exercise increases in difficulty as it goes along. (this video was taken in January on a computer we were trying out)

Eye gaze computers allow for more than just communication. Caroline can play games or read books on the device. Here she is playing the xylophone with her eyes back in January.

Caroline has her own eye gaze speech device!

We have many days when we look at each other and think "can you believe this is actually happening?" Some of those instances are sad, some are upsetting, and some are filled with joy. Today's moment was a happy and emotional one.

Caroline received her very own eye gaze speech device. The device has a camera that captures Caroline's eyes as she scans different symbols and pictures on the screen. When she focuses on a particular symbol, the computer registers her choice and "speaks" for her. Please click here if you'd like to read a post about Caroline's first time trying an eye gaze computer back in October 2012.

For the last 7 months, Caroline has been trying out different eye gaze devices to determine the most appropriate for her. Using one's eyes to point to a screen in order to communicate is a MUCH harder task than it looks. It takes a lot of practice and patience. For Caroline, who already struggles with apraxia and involuntary movements, the challenge is even greater. But Caroline has been working hard with a speech language pathologist to learn to correctly target and "hold" her eye gaze on specific symbols to communicate. In addition to successfully learning to make choices between activities, Caroline has also learned to consistently say "yes," "no," "go," and "stop."

I have no words to describe the excitement and gratitude we feel to have this speech device available for Caroline to communicate autonomously.This is life-changing!!

Here's a picture of Caroline and her very own eye gaze computer! It's pink!! She picked the color (naturally).   

Here she is letting us know (on a rented computer back in March) whether she wants to play with a toy pig or have us blow bubbles (which she loves!).  

Caroline riding a tricyle for the first time

Caroline's physical therapist at school sent me this video of Caroline riding an adaptive/therapeutic trike for the first time. Her classmates cheered her on as she peddled by the playground. She really did have a lot of fun, but this video was taken near the end of her time on the trike (she was tired and ready for lunch).

Watching the video is a bit surreal to me. At first, it was bittersweet to see Caroline doing something I had never pictured in my mind. But Mike and I got a kick out of seeing her ride a trike like any other 3-year-old.

A video of Caroline laughing at my silly faces

When Caroline was diagnosed, we weren't sure what to expect. We didn't know if she'd be able to laugh or even smile. My biggest fear was that she wouldn't be able to express love.

Rett Syndrome has robbed Caroline of a lot of things. But she remains "Caroline." Full of love and full of energy.

I took this video of Caroline tonight.

Separating Caroline from Rett Syndrome

Wishing for a cure.

It's hard to believe how conflicted I was about it for so long.

I think I so desperately needed to accept Rett Syndrome (and get on with our lives) that whenever I found myself wishing Caroline didn't have this disorder, in my mind, I felt like I was somehow rejecting her. I had such difficulty reconciling that Caroline had an identity outside Rett Syndrome. After all, Rett was here to stay. Nothing would ever change that.

Signing up for the Half Marathon to raise funds for Rett research forced me to confront those feelings. It forced me to think about who Caroline really is. She is sweet, she is smart, she is sparkly, she is feisty, she is demanding, and she is loving. Caroline is not defined by her disorder. Caroline is who she is despite Rett Syndrome. The most painful for me was finally accepting that Caroline's condition gets in the way of her ability to reach her fullest potential. It's so hard to admit that out loud. Writing that very sentence makes me feel like someone just punched me in the stomach.

I hope that researchers soon find ways to treat this disorder. I can now say that without fearing that my feelings imply I'm somehow rejecting Caroline. I simply wish for her to have a life without such profound challenges and struggles. She deserves better than this.

Caroline is spreading awareness with Cure Rett

We're proud to share that Caroline is part of the Cure Rett awareness campaign!  Please visit the Cure Rett site and Cure Rett blog to see her cute picture!

"She won't know any better"

Those were meant to be comforting words by a well-meaning person in reference to Caroline's diagnosis.

I didn't like what those words implied. Did they mean Caroline would regress to the point where she would never be aware of her differences? Or did they simply mean that a person can't miss something they've never had? I remembered being angered by the condescending tone of that "reassurance." I remember also secretly hoping that some of it would be true. Rett Syndrome is often described as trapping someone in their own body. The thought of Caroline being sad or frustrated because of her disability was just crushing.

In the 21 months since receiving Caroline's diagnosis, we've learned that Caroline is aware of her condition. And she is indeed frustrated by the limitations and challenges caused by Rett Syndrome. Caroline screams or cries when we can't figure out her urgent vocalizations. She fusses when she can't move towards something or someone. She struggles unsuccessfully and complains when she finds herself on her stomach or on her side. She looks down with sadness when we talk about her condition in front of her.

Caroline has multiple and severe physical disabilities, but it's clear that her inability communicate is the biggest source of sadness and frustration for her (and us). Yet I can't help but find some comfort in Caroline's tenacity and determination around wanting to be understood. She wants to say things. She wants to be heard. She is smart.

To anybody who doubts it...yes, Caroline is "in there." And she does know better.

Pictures from last week. 

Caroline loves to snuggle with me. I absolutely love that she lets me smother her with my "intense" kissing and hugging. haha!