I am not here tonight.
I am home in bed, but I wrote a message that I asked my mom to read to you.
I am so happy to tell you that Arc made a big difference in my life. I have a disorder called Rett Syndrome and very little was known about it when i was in school. I was assumed to be very low in intelligence and given opportunities that a small child would be given.
I can’t imagine what would have happened to me if I didn’t have an advocate to come to my meetings at school with my parents. My Mom didn’t agree with the little that was offered to me in school, but she was not understood by the teachers. They assumed that she overestimated me.
I have never spoken more than one word in my life. That word was ‘meow’ when I was very young, but I have found my voice. I have found it through my writing and through my music. Because of an advocate, I got to see a music therapist in school. My music therapist, Karen Bohnert, knew my family was musical and she thought that maybe I had a song inside of me too. So instead of giving me a chance to strum a guitar, or tap a drum, she helped me by finding a way for me to compose my song. I had no way to play it , or hum it, or write it down, so it took us a long time to compose that first song. But, that song changed my life. That song was heard by many people at my school. They were surprised because many of them assumed that I was the young girl with a diagnosis of “profound mental impairment”. They were wrong! My song came into their ears and their hearts were changed.
I have continued to compose with Karen, and over ten years we completed nine songs. Because I got the opportunity to share my songs with others I saw how it helped open their minds and hearts. I got the funding through the CCP Foundation this past year to create a CD with professional musicians. My voice is my songs and my writing.
I am so glad for people who believe in us: those of us who are misdiagnosed and misunderstood and given little to do in this world. Thanks for helping Arc continue to do this for my silent friends, who do not yet have a voice that others can hear.
I was not there because I am in bed most nights by 6:30 or 7. I have been very tired. I watched the video this morning with my Mom. It was beautiful. I heard the message she read, and it was perfect.