Silent Angel…Not So Much!

I am sure that most of my rett friend readers have heard the term “silent angel” in reference to the girls that have been diagnosed with Rett syndrome. I imagine the term references that the girls don’t use words spoken with their mouths to communicate. However, Claire is far from silent. First of all she has a voice through her computer and secondly, there is nothing quiet about Claire. Weather it is her laughing or screaming or maybe grinding her teeth, certainly none of these things make me think of silent. On Friday Claire’s computer had an error that required me to call tech support. Of coarse Miss Amazing remembered roughly 30 seconds after they switched their phones off for the weekend, drat! With that as the stage, Friday afternoon and evening were pretty painful. Claire wanted to talk and she made it abundantly clear she was not happy. It was an emotional 5 year old, why are you doing this to me cry/scream that slowly ripped my heart out as it went on. We were aggressive on keeping the fun levels up over the weekend and that helped take the edge off her missing voice. Monday passed, it was long, but aren’t they all? Again, I didn’t call tech support in time but at least Claire’s allergies were bad so between a long nap and being out of it at dinner she hardly noticed. Tuesday was my day! I got on the phone and the great tech support at PRC walked me through resetting it to factory settings, problem solved! Too bad I hadn’t backed up the device since September, drat! Oh well, what’s done was done, I was having a good day and wasn’t going to let that set me back. I even took the time to help Claire walk to the dinner table and she did so well! Too bad Chloe tipped too far back in her chair and went crashing down with a loud thud to her head. Buckle Claire, attend to Chloe, situation back under control and tada, Claire’s talker is working! Right away Claire started saying all sorts of things. Typically when she says something, she pauses and looks for a response from her audience. But she wasn’t looking away at all, it was a run on, she looked stuck. I gently turned her cheek toward me and told her that it was alright to take a break from her talker, that she could just look at me and we could chat. Immediately tears welled up, her glasses steamed up and the whaling began. Chloe looked at me and said, “Claire’s mad Claire’s sad” what a perceptive little girl. It was an hour of the high pitched mad as hell business. She never ate her dinner and got into her pj’s screaming. There is no doubt in my mind that she is a sweet little girl and that my life is better with her. She is strong, smart, funny, caring, loving and so many wonderful things. Silent, not so much.

5 thoughts on “Silent Angel…Not So Much!

  1. yeah…. they may not talk but our girls definitely have a lot to say!!!! ❤ and hugs! Deardra and Madelyn (Madelyn just started her 1 month trial with the my tobii c12 with c-eye) I will keep you posted.

  2. I'm glad her talker is back in working order and hope that she'll be in the right frame of mind to use it tomorrow.

    There are days when Abby is very quiet and days when she is anything but. I used to think she was loud….until Logan.

  3. we've got a loud one here, as you know! barely ever quiet between the grinding, screaming, crying and the hands! we are getting a dynovox to try at school! wahoo!

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