So quiet around here.

Without the chatterboxes here, the house is quiet. Edda, me and Ruby are all of very few words. We can have a dandy old time together for hours without saying anything to each other.

Almost all the folks with Rett Syndrome are non-verbal. Actually, a lot of the kids acquire words (one person from the internet support group mentioned that his daughter had a vocabulary of 300 words) before the regression hits at about 12-24 months and all verbal skills are lost. There is even a nickname for Rett girls – “Silent Angels” (which is a bit too sugary and morbid for me, since Edda really isn’t silent because she laughs and has vocalizations when she’s pissed, happy, angry, surprised and she isn’t an angel – because angels are in heaven and she isn’t there yet and she’s isn’t an earthly angel because she will butt in front of her brother for the TV and she will bite you until you bleed and she will drop herself like a dead weight in order for you to carry her while you are holding a huge bag of groceries – but you get the silent idea). Edda really never had any words – if she’s really mad and it’s bedtime, sometimes we will get an exasperated “MA!” but that is pretty much it. But these past few days, her teachers and her therapists swear that she is saying “apple” and “happy”. I have to say that I am skeptical about all this, I have pretty much given up any expectation of Edda ever having any verbal ability, but get this – I can hear those words too. It’s too early for me to call them words, I think I’ll just stick to calling them sounds that Edda likes to say and they happen to sound just like happy apple. (Wouldn’t it be so cool if Edda could talk? – I’d settle for just a handful of words… ahh, I’m getting all bleary-eyed thinking about it…)



Common name: Geiger Tree
Scientific name: Cordia sebestena

Location: West Coast park

One thought on “So quiet around here.”

  1. I know exactly what you mean about vocalizations sounding like certain words. I, too have a daughter with Rett Syndrome. Her name is Emily and she turned six in September. I often ask her simple yes/no questions trying to figure out what she needs. She often says what sounds like “yes” I’ve only heard her say “no” one time, so when she says yes, we take that as “yes.” Last winter she said “I love you.” to me. That’s the most I’ve ever heard her say at one time and the only time she’s ever said a complete sentence. She also says what sounds like “Daddy” often. She smiles and laughs a lot. She cannot walk yet. Even so, she’s absolutely precious and I wouldn’t trade her for anything. I just hold out for those few and far between moments when something really special happens like the “I love you” comment. Those are the best!

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