A Miracle Happened!

July 28, 2011 · Filed under CD production, Disability Awareness, Facilitated Communication, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged miracles

This week I had something really wonderful happen to me and I want to share it with you. My friend Elizabeth who also has Rett Syndrome and communicates by typing too, came for another visit.  We love being together!  It’s so rare for me to be with another Rett girl who can communicate, so when we are together we have so much fun.  I feel free with her.  

We were so close to the water, which we both love!

We went to a lake near our house.  Our mom’s went to pick blueberries so they were not with us, but a new person we just met to be a caregiver for me, went with us too.  What she saw has never happened before with Elizabeth and me.  We decided to switch facilitators so Elizabeth’s caregiver facilitated with me and I was able to type.  That was the first time we did it together and that is a miracle, because many times when people see me type with Mom or Amy, they assume they could never do it, and stop trying.  But when Kristen took my hand and helped me stop my movements I was able to type words for her.  It was slower than Amy or my Mom and that is a miracle!!

Then, Amy facilitated with Elizabeth and she typed for her too, immediately!  I wanted to share this because both Elizabeth and I have struggled so much to type out our thoughts in our lifetimes and few people try to type with us, which makes us sad.  It makes our Mom’s the only person everyday that we can type with, so whenever anyone wants us to respond, they run get our Mom’s and it has made them exhausted and us frustrated because we can type with more people who are interested in learning.

When I was thinking about this today and think of all the people who have been in my life and have missed what I wanted to say because of their inability to help me communicate, I felt sad.  But then I remembered Tuesday, and I remembered how happy Elizabeth and I were to be free to type for the first attempt at it with another person. I felt so much joy, because I know it is possible still for new people to help me communicate.  I feel really hopeful that my new caregiver who was really interested in what happened will be able to type with me too.  

I stop and chew on my bandana while I am typing. I am visiting with my friend Barbara who produced my CD.

My friend Ashley and I could type slowly together. She just moved to Chicago and I miss her so much.

It was a miracle because Elizabeth holds her hand very different than I do.  She has very strong fingers and holds them really straight and types very well right on the key with her left hand.  I type with my right and curve my finger and use the side of it to touch the key.  I fly over the keys really fast so my facilitator looks over my right shoulder to see the letters.  We both move our heads while we are typing, because both of us can see better if we don’t stare straight at the keyboard, so we move a lot.  Rett Syndrome doesn’t let us sit still very often.  Elizabeth is always moving her body and I am always moving my hands.  I stop to chew and fiddle by drumming with my left hand while I’m typing.  I move my upper body forward and back all day long.  I thought this is important because I have had so many therapists think if we aren’t looking straight at something that we are not paying attention.  It’s not true, don’t believe that!  We get everything.  We see everything.  

Elizabeth and Kristen are coming again next week and we are going out on this boat again. We love being together near water.

I was sharing my excitment with Amy just before we went on stage and my Mom read the message I had for the audience. (The Arc MN 2010 Annual Meeting) There were about 350 people there.

I wanted to share our miracle and how fortunate we feel that this happened for us.  Everyone was smiling!!  Everyone felt hopeful.  We were so thrilled!!  My Mom says she wished she was there with the camera, but the blueberries are great!

Love, Karly