Archive for February, 2009

Something For My Eyes to Focus on

I have written more about my vision on My Rett Body. 

Karly

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In My Own Words

I have added more information to my communciation page about how I have learned. 

Love, Karly

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How I Communicate

I have started writing about how I learned to communicate. I will add more as I am able. It is on a new page, called How I Communicate.

karly

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I Am Amazed

I am sitting her this morning with my Mom, feeling so happy.  We were gone for an appointment yesterday and didn’t get home until late in the afternoon.  We checked my blog when we returned and discovered that hundreds of people had been on my blogpage! This was a new experience. Usually there are about 100 each day.  I want to tell you about how much joy I feel over the messages many of you have left for me.  Your words of hope and encouragement to continue writing give me strength.  I am not sure how it happened and how all of you have discovered my writings, but I am really grateful. I hope you find even little ways that you can believe in your daughters because of my ability to share my story.  If there are other girls or women out there who can communicate with me personally, I would be so excited to hear from you.  I think our voices together will help so many of our silent Rett friends.  I know of at least four and I know there are others. 

 

I want to start by saying, if you have specific questions related to Rett, please let me know.  There have been other parents who have sent me specific questions, and if I am able to relate to it, I will try and write about it from my experience.  In some cases my other Rett friends who can communicate with a keyboard, have written with me.  You can find a couple of our writings on MY RETT BODY.

 

 I know there are some Rett girls and their families who are having a really hard time right now and I send my love and encouragement to you.  We have had those too and I know how painful it is for my parents and for me when they happen. 

 

We are very aware how fortunate we are that we have discovered a method of communication for me.  I feel responsible for sharing my story in the hope that my words may offer insight.  It has given me so much joy to have a way to do this and reach people around the world. I’m continually amazed that there is technology available that allows me to support people in countries I have never heard of and will never have the ability to travel to.

 

 I wish peace for your day. As of right now there have been over 900 people who have visited my site today. Thank you and Thank you for giving me notice…a young woman who is silent and is now being heard around the world, is nothing but a miracle, and I thank God.

Love, Karly

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My Emotions

I have written about my emotions and their effect on me, on My Rett Body. Check it out.

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Getting Past my Distractions

I wrote again about some of my experiences using facilitated communication and how challenging it’s been to find people who believe that girls with Rett are just silent, not unaware.  Check it out on MY RETT BODY.

Love, Karly

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Therapists

I wrote some of my thoughts about all of the visits I have had related to speech therapy in an attempt to help me learn how to communicate in ways they approve of.  I had one of those visits today. So instead of getting really angry about, I decided to write instead.  I hope it helps my silent friends know that they are not alone.  I relate to their struggle.

Karly

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