Archive for October, 2009

My CD!!

October 26, 2009 · Filed under Disability Awareness, Music & Art, Understanding Rett Syndrome

I sat for many hours watching and listening to Leah play when we were young

I sat for many hours watching and listening to Leah play when we were young

I am so happy to let you know that I have an appointment this week with a studio about getting my music on a CD. We heard that there is funding available to help me get my music recorded in our town.  So I am very happy that it is about to happen.  We are meeting with the owner of the studio to find out the details.  I have asked my sister Leah, to play her viola for a couple of my songs, so she is getting her part ready.  It is so fun that I can now share music with her.  She is a great musician and has played viola for most of her life.  She plays in an orchestra and a band, so she is very good. But to have her create music with me is something we haven’t done before.  She is always encouraging of my music so this will be fun for us. 

My uncle is getting married in December and he and Kristin asked if they could use my music for their ceremony.  Leah will be playing for that too.  What is fun for me is that now I don’t just have to listen to others play their music, but the songs that are in my heart can be played by others and I can enjoy them too.  I can’t play my songs because my hands won’t work that way, but others can perform the music I have composed.  It brings me great joy.

 Love, Karly

I always wanted to play. This is at my grandma's house.

I always wanted to play. This is at my grandma's house.

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My visit with Susan Norwell

October 16, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

Yesterday I got to meet Susan Norwell at my house.  She was so respectful of me.  She works with other girls with Rett Syndrome and also autism, so it was wonderful to see her and be encouraged to keep writing.  She introduced me to the Tango which she thought might help me communicate more easy with others who are not able to type with me.  It was an awesome week this week.  I have had so many wonderful things happen.  It gives me much joy.

My Mom read what was written about Susan from the Rett conference, so I asked her to write it for you.

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(This was taken from the Rett Gazette which is the International Rett Syndrome Foundation Newsletter-Summer 2009)

Susan Norwell presented at the IRSF family conference with two colleagues who are all communication experts with a special interest in Rett Syndrome.

…”some of the most encouraging, energizing sessions of the weekend.  Linda Burkhart, Susan Norwell, and Judy Larviere,  a power-house trio of communication experts in the field of Rett Syndrome, took the stage for the next few hours to show us just how possible it is to “capture the light in our girls’ eyes” and empower them with communication tools.  As their advocates, we can take the experts’ information and techniques to our educators, speech therapists, and assistive technology professionals and challenge them to help our girls communicate.  They encouraged us to move beyond testing our girls, and to create an environments that encouarges communication and learning as a process, not a test.”

 

Love, Karly

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Happy Birthday Mom

October 16, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

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When I came to this earth my Mother was 24 years old.

 I was welcomed into her loving heart. 

There was no sign, no labels, no obvious reasons.

She took time with me. 

She gave me opportunities to develop.

She heard my cries, long and full of pain.

 It is her heart full of valor that believed the best for me;

that didn’t stop at the labels that limited me,

but continues to move slowly through open doors, that ever so slowly changes the minds, hearts and ideas of others.

The world will be different for Rett girls because my Mother believed in me, and in doing so has given hope to my silent friends.

I love you Mom,

Karly

 

 

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My Visit with Ingrid

October 13, 2009 · Filed under Disability Awareness, Understanding Rett Syndrome · Tagged , ,

I will do my best Ingrid

I will do my best Ingrid

My friend Amy came to meet Ingrid too

My friend Amy came to meet Ingrid too

 I had a difficult start to my day yesterday.  I had a seizure at 7 in the morning.  I haven’t had one for many weeks so it was a bummer.  I wanted to feel great on the day Ingrid Harding came to visit me at my house.  She was so kind and respectful to me.  She was like a close friend.  She understands Rett Syndrome so well, so it was freeing for me to be with her.

If I could understand all the things she is hopeful about I would try and explain it, but it is something that I can’t describe so I will ask you to go to her web site to get more information about Rett Syndrome research.  She is a mother who has a huge heart and wants the Drs and the researchers to find a cure for Rett Syndrome.  She is very hopeful that it can happen real soon.  What she needs is more people to understand what it’s like to have Rett Syndrome and how it affects families.  Her daughter is 8 years old that has Rett.  Her name is Sarah.  She has a lot of breathing challenges like I do.  Ingrid has dedicated her life to helping everyone get involved in raising money so the cure can happen soon.  She said it could happen within 10 years with enough money to help them. I asked her how I could help and she said to keep telling my story.  I have some information that is helping Drs in Australia, so I continue to work on their research project too.  I love being able to help them.  It helps me feel better about the struggles in my life related to my disorder because I can share them. 

 My Mom read one of the brochures to me that Ingrid left for us. The front of it says: IMAGINE The Symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorders…all in one little girl. I think since I don’t know what it’s like to have Parkinson’s I couldn’t have described it this way, but if it helps others understand what Rett girls face everyday, I am glad someone put these things together.  Please check out Ingrid’s information.  She is a wonderful Mom who’s trying to make the world a better place for so many who struggle.  She said the researchers feel they are close to reversing the damage, not only of Rett but of other disorders that are similar.  See what you think after reading their information.

 I asked my Mom to get this down for you: Girl Power 2 Cure is the organization that Ingrid Started to help raise awareness and funds for research. Here’s the link:

www.girlpower2cure.org

 Love, Karly

I decided to put my magnet from Ingrid on my van

I decided to put my magnet from Ingrid on my van

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