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We talked to a Rett communication expert today who told us that it has not been her experience that girls learn how to speak after their regression. She noticed Jenny and I took that a little hard. See, if we can get her to speak, and we can find a way to get her to control her arms, then there would be no clinical presentation of Rett. More or less. And if that’s a major goal, which it is, then not being able to get her to talk is a major obstacle to that goal.
At the same time, this whole week she’s been imitating us and vocalizing a ton. She’s got three or four sounds that she uses, repeats, imitates us doing. Not all the time, but frequently enough to give us reason to believe that Maggie can be the exception. Our speech therapist also believes. Which is good. I guess if she didn’t, we’d find someone else who did. But if you’re with her every day, it’s hard to believe that all her current vocalizations aren’t the beginnings of speaking.
I love a good challenge. And the idea that it may be unlikely to happen makes it that much more likely for me to try.
As u have heard b4,”when experts disagree,the less expert are free to choose”. Also,if it is this woman’s experience that Rett girls don’t speak,perhaps she should be called a Rett non communication expert or a Rett communication non expert or best O’s all,shouldn’t be called at all
I don’t think she knows who she is dealing with. It may be her experience up to now, but we believe you & Jenny, & Maggie will prove her wrong.
With hope and determination all things are possible so stay hopeful and be positive. With this much love there is no way she will not find her way and be able to communicate.