Grace for Rett » Grace's Life with Rett Syndrome

“Silent Angel” my eye!

By the way…who ever came up with the nickname for Rett girls “Silent Angels”? And who else out there laughs when they hear that? My angel is NOT silent. She doesn’t speak, but she sure does scream, screech and shout ‘BA BA BA BA’ when she wants her bottle! In fact, this week she’s discovered her screech. Most of you know the one. Because Jack did it for a whole year and drove everyone in our town insane.

It’s hard, though, because the initial reaction is to scold her or firmly say ‘NO’ with a disapproving nod. But how on earth can you say that to Grace? We want her to communicate. But if she keeps this up, when there’s a cure we’ll be too deaf to hear her voice! lol.

Catriona - August 10, 2010 - 10:48 am

Oh yes, I hear you. Sometimes I think the single thing that would help me most day-to-day is a pair of ear-plugs. It’s when she’s yelling RIGHT IN MY EAR when I’m carrying her that I find particularly hard to tolerate.

Steven - August 12, 2010 - 11:21 pm

Oh yes, ear plugs are a must. My ears are still ringing from 2 days ago when Grace screamed in my ear for an hour. I love her screams though 🙂

Pennie Eikleberry - August 21, 2010 - 1:46 pm

This really made me think when I saw this…..sadly my Rett Angel is now Silent! She was very vocal in her younger days, now she is 16 and passive about vocalizing….due to the fact that others viewed her vocalization as “yelling”, “screaming”,etc., which in their view was inappropriate in certain situations. I tried and still do to convince them this IS appropriate behavior for a girl with Rett Syndrome as it IS a form of communication in her world! Keep your girls vocalizing!!! It was always sweet wonderful music to my ears!! I miss it. <3

admin - August 22, 2010 - 5:39 pm

@Pennie: Wow thank you so much for sharing that 🙂

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