Thursday, December 20, 2012

Ending the year on a bittersweet note

This past year was marked by exciting progress, some painful realizations, and a new level acceptance.

It's hard to believe Caroline is almost three. In a lot of ways, she's not that different from most girls her age. She loves spending time with her grandmas. She likes watching Sesame Street and Beauty and the Beast. She gets a kick out of dressing up like Princess Belle. She is obsessed with Yo Gabba Gabba. She enjoys being around her friends. She laughs at our silly jokes. She can be goofy. She can be serious. She grins when we tell her we love her. She gets feisty when she doesn't get her way. She is smart. She is sweet. She is patient. She is full of love.

Unlike her peers, Caroline is on a very different path. This path is limiting. Aside from the physical impairments, Caroline's disability also affects how the world perceives and treats her. "Caroline can't speak, but she understands what you say to her." I sound like broken record. Despite polite nods, I sometimes detect skepticism and pity. Assumptions are often made about Caroline's intellect based on what her body is able or unable to do. She is unable to speak. She is unable to use her hands to feed herself, hold her baby dolls, or point to images to communicate. She cannot eat food that has not been pureed. She cannot walk or stand on her own. She has constant involuntary hand movements. She grinds her teeth. She rocks her body. She holds her breath. She still spits up. She needs assistance with every aspect of daily living. The "evidence" is stacked against her. Caroline is often presumed unintelligent until she proves people otherwise.

Sadly, I've come to realize that poor perceptions about Caroline's cognitive skills can be more debilitating than her own physical disability. These perceptions limit her ability to grow, learn, and experience the world like her typical friends. It takes a certain level of investment in time and energy to see beyond Caroline's symptoms. To see that she has the ability to learn and develop new skills. To see that she really does understand what you are saying. To see that even though she struggles to talk, she still has plenty to say. Caroline supposedly has the same rights as the rest of us, but Mike and I often find ourselves needing to advocate for her access to some pretty basic needs. Poor perceptions about Caroline's intellect also chip away at her innocence. Caroline is often talked about as if she's not in the same room. As if she can't understand. Or as if it doesn't matter if she does. She is exposed to discussions and assessments about her condition, progress, and delays on a regular basis. Yes. We do it too. And we're trying our best to watch how we frame our explanations, especially as she gets older and more perceptive. But we can't control what happens when we're not around. A person who cannot communicate tends to become invisible.

Caroline's condition also impacts her ability to fully participate in "regular" childhood experiences. Easter egg hunts, pumpkin picking, trick or treating, decorating the Christmas tree, baking cookies, building sand castles, going to playgrounds, leafing through books, playing with dolls, drawing, dancing, singing... these are all activities Caroline is unable to enjoy without a high level of assistance (we have to manipulate her hands, move her body, and talk for her). We do our best to expose Caroline to a wide range of "typical" experiences, but I can't help but wonder how her inability to fully engage (on her own) affects her overall socio-emotional development. I don't want her world to be small just because she has Rett Syndrome.

Finally, this year has changed my understanding of reaching acceptance. Acceptance is no longer a place free of sorrow, grief, anger, and frustration. In fact, acceptance for me is coming to terms with the fact that those feelings will bubble up from time to time. And that's okay. I can still be at peace with Caroline's diagnosis. I can still experience moments of joy. Which brings me to another point. Having a child with severe disabilities and a shortened life-span has forced me to be truly present. Consequently, happy moments are even sweeter and more appreciated than ever before. I feel love more deeply too.

Caroline's condition brings me a great deal of pain. But I am immensely thankful for the perspective I have now. I feel like I've never seen more clearly.

Overall, I think we had a good year. And I don't take any of it for granted.

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Last year, we spent a lot of time worrying about what ability/skill Caroline would lose next. This year, we worked on preserving and improving skills. Caroline proved to us that Rett girls can continue to learn and develop even after they hit the Regression stage. Below are videos showing some exciting milestones Caroline achieved around communication, gross motor skills, and hand use.

Communication 
Caroline has lost all of her words except for "da," which she uses exclusively to call Mike. She vocalizes like a young infant.

A major breakthrough came in October. We finally found a method to communicate two precious words that have opened up her world: Yes and No. We are also working on using the Pragmatic Organization Dynamic Display (PODD) communication system. Soon, we will begin trialing eye-gaze computers at home.

Caroline still tries to talk  (December 2012)

Caroline can now make choices using Yes/No (November 2012) 
Note: we use eye-gaze and head movements for Yes/No

Caroline's first time using an eye-gaze computer (October 2012)  


Gross motor skills 
Caroline is unable to stand on her own or initiate steps without cueing and input.

This year, Caroline finally learned to come to a seated position by swinging her legs. She has also recently started using her gait trainer to move towards things and people. The gait trainer offers her a level of independence she's never had.

Caroline is beginning move to where she wants to go (December 2012)

 Caroline learned to sit up by herself. She uses her legs and momentum!  (March 2012)

Hand use
Caroline is unable to use her hands to feed herself, pick up objects, or even pet our dog Kroeber.

This year, Caroline recovered some ability to grab things that are placed in her hand. With the help of her arm braces, she has also regained some control of her arms to manipulate objects. She is sometimes able to reach out and touch our faces.

Caroline helping to "push in" puzzle pieces (October 2012)

Caroline manipulating one of her favorite musical toys (September 2012)