Four Rett Women

I have had an amazing day. Just after we posted our first blog today I got a message from a Mother who has a 44 year old daughter who has Rett Syndrome.  She has used Facilitated Communication for sixteen years and didn’t know anyone else who could communicate.  It is so exciting and reassuring for all of us to know that we are not the only ones who can communicate using Facilitated Communication. 

I know this may not seem all that remarkable to many, but for us it’s miraculous.  Each of us has struggled in our own silent world for all of our lives, because we were thought to have low intellect.  If the tests indicate we have low intellect, our ability to prove otherwise if we can’t demonstrate it easily, is impossible. After we are given the diagnosis of Profound Retardation, the opportunities given to us only reinforce what they believe about us.  They offer activities they would to a toddler and wonder why we have behavior problems. 

For today, all is right with our world. There are 4 of us!!!

Love, Karly and the Rest of Us


1 Response so far »

  1. 1

    Andrea said,

    Amelia, my daughter, has also used FC. She’s now 28. I am searching for families
    whose daughters have the same polymorphism that Amelia does. It may or may
    not be diagnostic; at present it isn’t considered to be. It is 1461+14 C>T. Thanks in advance for any networking about this!


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