Archive for September, 2010

My Message for an Event

September 21, 2010 · Filed under Disability Awareness, Music & Art, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

I was asked to share my story for this golf tournament

I wrote my message and my Mom shared it for me

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.

Karly Wahlin

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.

Love, Karly

Emily went with my Mom and ran the video for me.

My Mom is my voice


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In Friendship

September 16, 2010 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

I have been very tired lately.

I am so eager to talk about what I saw on Oprah today. I suppose many people think strong feelings about people who are gay.  I don’t know any gay people myself, but I know that I would probably have friends who are gay if I met them.  I think many of the things that they experience in this world are the same as the struggles I face as a disabled person. I feel the discomfort of people in this world when I am out in the community.  Their looks are not unnoticed.  Their lack of compassion is felt. The lack of kindness is evident in their actions.  I’m not saying that this is all people.  If I walk into a room with my wheelchair being pushed, I feel these things.

The show today was about aids, and a young man and his sisters who live in a small town in West Virginia.  It was 1987 and people had very angry, hurtful, mean things to say to him.  They were put on the Oprah show.  That was when I was two years old. I have heard what people said, and I think not much has changed for many of us with disabilities. People feel we are best in a program where others, they assume are like us, should be.  They want to be comfortable in restaurants and many of us make them uncomfortable.

e experienced in a large church eight years ago, something that has left pain in our hearts. My Mom was told that I should be in the cry room at church so others wouldn’t be uncomfortable by my presence.  She told them I was sixteen and that I wasn’t crying, but that I was holding my breath and trying to catch it if I was making any sounds.  She was told that I was a distraction to others and they might not come back if they saw me the first time they came to church. This is a huge church, not a small one, so my sounds were drowned out by the group of people.  It hurt our hearts to be seen that way.  It explains why there are very few people in churches that are very disabled.  People aren’t always as bold as that pastor was, but their spirits and their thoughts affect their actions towards people like me and my family.

I have some great friends and I have family who love me and that helps me feel better on days when I feel alone. But I felt sad for the man on Oprah’s show today who has died and was from a town who turned their backs on him and his family in a very big crowd on TV.  I hope if he lived in my town today that I could meet him because we have some common experiences.  I hope he would be loved here today.  I hope he would be fortunate to live in your town.  I hope if I met you today on the street that you would greet me and not just look from a distance because that makes me feel very sad.  I learned a lot today, I don’t want to forget it.

One of my favorite memories from camp. A place where I felt accepted.

Love, Karly

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The Gift of Belief

September 1, 2010 · Filed under Rett Syndrome, Rett Syndrome Intelligence · Tagged , ,

It is a beautiful morning here.

In this month I have a number of things I will be doing.  One of them is finding out about Facebook and seeing how I can hook my Facebook and blog together.  My friend Danielle is going to give us some information that might help us decide how to do it.  I have a speaking opportunity this month that is a fund raiser for Arc Minnesota.  They advocate for people with disabilities in our state and were very helpful to my family when I was younger.  I was asked to be the speaker for the women’s golf tournament.  I’m so happy to share a message for the Arc fund raiser because they were so helpful to me when I was in school.

My opportunities in school as a young girl still make my heart sad to think about.  So little was understood about me and who I was, so the opportunities for education were limited throughout my school years.  But what was worse were the meaningless goals that were given to me for many years in a row.  I still can’t accomplish many of those goals, and it’s not because I’m lacking intellect, but because my body doesn’t cooperate with my will!  I hope that other girls with Rett Syndrome who are young and in school now, are given opportunities for education and not assumed to lack intelligence.  If we are only given childish goals we will not be able to demonstrate we are capable of so much more.

I don’t get it when I hear that kids who are not considered disabled are given challenges that make them work hard, but those of us with many physical limitations are given things that babies could accomplish.  If girls with Rett had people who gave them things to learn that make their minds think, when the day comes that they find a way to communicate they are far ahead of girls who were entertained with musical toys.  I speak from my life because that is what happened to me in school.  My Mom never believed it but the teachers felt their expertise was the best determination of who I was.

I am so glad for Arc and the advocates who came to the meetings with my parents to help me have a better time in school.  It wasn’t perfect but I ended up with a new school and an awesome teacher who believed in me.  That happened when I was 14.

I’m going to write my message today for my talk in September.  It is a great thing to do, to encourage others to speak up for those of us who are not yet heard.  It’s not hard for those of you who have a voice others can hear with their ears.

Thanks for all the ways you have helped my silent friends.

love, Karly

The last time Leah was home she helped me buy my new computer. She and Aaren helped set it up.

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