Posts tagged Rett Syndrome

I Live Because I Communicate

I know many of you are wondering how I type. I will share what it is like for me.  I was able to type the first day I was given a typewriter during my assessment.  The woman who did my assessment had learned from the best in the world at that time.  How she did it was she gave me picture cards, then moved up to word cards, then a small typewriter–all within the first day.  It was how she held my hand that allowed me to have intentional movements. 

I think it was because of her experience with others who are autistic that she gave me the opportunity.  My teacher and a therapist were at our home to watch the assessment.  My teacher was not in agreement with my intelligence.  She was vocal about it at school because she was certain her ideas about me were correct. 

I remember asking the assessor a question.  The first words anyone saw me type:  Can you record?  She was showing me the typewriter, and I wanted to know if it would keep the words I typed into it.  It was the first words my mom saw me type and it began a whole new life for us. 

Before I could communicate I was so oppressed, I wanted to die.  If I hadn’t learned to use FC I would not have had the will to live.  I wanted to do more than share my basic needs.  I had so much more I needed to say.  It was so exciting to find a way to share who I was. 

If my mom had believed what others were saying about me, I would still be doing meaningless tasks.   My mom believed in me when all others gave her no hope.  If we let others determine who we are, we will become so much less than what we are capable of.  My mom is the one person who didn’t let the beliefs of others determine who I am.

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Hello world!

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I’m boldly going into my first blog! I’m ready to share my thoughts about my life and what I want others to learn about living with Rett Syndrome. This may surprise you if you have not met someone with Rett Syndrome who is able to type.  I am eager to show you that those of us who are silent are not ignorant. I wish to thank my friend Sandy for helping me get this started and encouraging me to share my thoughts with the world. So I will attempt to do that as I am able.  I’m going to post pictures with me and my horse Beau.  Please check back soon!

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