Archive for March, 2011

In Peace

March 31, 2011 · Filed under Disability Awareness, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing

I have had a great week because I am hearing from others that my story in the Women’s Press has helped them see. I hope that there are changes happening in people’s hearts.

I feel so fortunate to have people around me who encourage me and believe in me.  It’s not possible to have a voice if we are living in silent bodies and no one believes that we are just stuck in here.  I have had help everyday of my life and will continue to need that while I am here on earth.  But if I don’t have opportunities to be with typical people I feel like I won’t have a way to help change people’s hearts and minds towards those of us who are non-verbal.

I’m excited because I have been invited to join a poetry writing group that meets in our town each week.  They call themselves the Mulberry Poetry group.  I am excited because it is a group of typical adults.  This will be my first time in a writing group for everyone, not just for people who have a disability.  I feel very excited about that.  I asked Mary, who is leading the group, if she would read my story from the Women’s Press today, so when I come next week, it will not be a surprise to them.  I get nervous sometimes in groups who don’t understand me, but I feel ready today to share my poems with a new a group of friends.

I feel peace and I am feeling fortunate today.

I send peace to all my Rett friends.

Sunrise from my room in the morning.

Love, Karly

 

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My Story in the April Women’s Press

March 30, 2011 · Filed under Composing for piano, Disability Awareness, Music & Art, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs

The cover of the April issue.

I am so happy that my story is now in the Minnesota Women’s Press!  Here is the link.

I am on page 14.  I am so glad I have a voice that can be heard through my writing.

love, Karly

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Never Give Up

March 25, 2011 · Filed under Music & Art, Rett Syndrome, Uncategorized, Understanding Rett Syndrome

I have not been good the past two weeks, but I am feeling better today so I decided to email the many people who have written to me.  I feel so fortunate today.

My friend Elizabeth, who also has Rett Syndrome, came to my house this week.  We had a great visit.  Her caregiver who uses the keyboard with her, was also here, so we had a great time talking about our lives, together.

Love my time with Elizabeth

She told us how much better she feels now that she started taking GABA.  It has helped her anxiety so much. So my Mom thought it was worth a try.  I had some at breakfast this morning. Only a little bit.  Right after my bath I fell asleep, really sound, for about 20 minutes.  I never do that!!!  If I could stop my anxiety and stressed out breathing, I would be so happy.  It has affected my life so much.

I want to share something really special with you.  One of my friends sent me an email with a story about a man named Paul Smith, who was born with Cerebral Palsy.  He grew up at home and lived much of his life in a nursing home in Oregon.  Here is his story, but the thing that amazed me most was his dedication to creating art.  Here are some of his pictures.  I was so impressed that he could create art on a typewriter!

Created by Paul Smith on a manual typewriter!

 

Here’s his webpage-  http://www.paulsmithfoundation.org/index.html

Here is what my friend Bethany sent to me:

“Pictures from a Typewriter”

“He lived at Rose Haven Nursing Home ( Roseburg , OR ) for years.  Paul Smith, the man with extraordinary talent was born in Philadelphia on September 21, 1921 with severe cerebral palsy. Not only had Paul beaten the odds of a life with spastic cerebral palsy, a disability that impeded his speech and mobility but also taught himself to become a master artist as well as a terrific chess player even after being devoid of a formal education as a child.”

“When typing, Paul used his left hand to steady his right one. Since he couldn’t press two keys at the same time, he almost always locked the shift key down and made his pictures using the symbols at the top of the number keys. In other words, his pictures were based on these characters ….. @ # $ % ^ & * ( ) _ . Across seven decades, Paul created hundreds of pictures. He often gave the originals away. Sometimes, but not always, he kept or received a copy for his own records. As his mastery of the typewriter grew, he developed techniques to create shadings, colors, and textures that made his work resemble pencil or charcoal drawings.”

by Paul Smith

 

by Paul Smith

by Paul Smith

by Paul Smith on his typewriter

 

“This great man passed away on June 25, 2007, but left behind a collection of his amazing artwork that will be an inspiration for many.”

I hope you never give up either.  I have felt like doing that somedays lately, but I always feel better, eventually.

I wish you peace.

Love, Karly

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What I want Nursing Students to Know

March 7, 2011 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

My friend Ashley is in school to become a nurse.  She asked me what I would like her classmates to know for a presentation she is doing on Rett Syndrome.  This is what I shared with her.

I am eager to tell the nursing students that they should always assume intelligence.  Don’t look at your patients face and decide if that person is listening, but assume we are hearing everything that is spoken in front of those of us who are disabled.  Many people think if we are not looking at their face when they are talking, that they aren’t being heard.  That is not true!!  We hear everything even when it isn’t true or it’s unkind.  Don’t say anything in front of someone who is disabled that you wouldn’t say in front of someone who isn’t disabled.  It’s hard to be a patient when you have a disability because nurses and doctors are often uncomfortable and don’t know how to talk with us.  But I would say, if you assume that I’m intelligent you will talk to me like anyone who isn’t disabled. Don’t talk louder.  I can hear you just fine.   If you need to do a test on me tell me what it’s for.  It’s more stressful to not know.  If you need to take some blood, don’t bring in a whole bunch of nurses and treat me like an object who doesn’t understand.  I don’t need to be held down if I am not afraid.

Love, Karly

My friends Barbara and Amy have been so encouraging to me. Barbara sang us a song she wrote

 


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More Memories

March 3, 2011 · Filed under Disability Awareness, Facilitated Communication, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

 

The first picture we have of me wringing my hands

 

Me with a book. Sometimes I could get my hands to work for a short while.

I have been thinking some more about my memories from my childhood.  I was so tired after I wrote my last memory blog, that I slept for a long time that night.  It makes me glad for where I am now in my life, but it is hard to remember the life I had before.  It wasn’t because of my family. They loved me and most of them believed in me, but it was schools and doctors and therapists and people in general that have given me the most sadness. 

I couldn’t imagine doing what I am now even five years ago, so I want to write about my child days because there are many other girls with Rett who can’t imagine their life being worth living sometimes.  I haven’t always had so many wonderful things happening in my life as I do now, but it’s because of the willingness of my family, especially my Mom to keep on trying, to keep on believing in me, that things changed. I have said so many prayers asking for a way to help others, a way that was believable. 

 

My Mom says I always looked closely at letters and numbers from the time I was a small baby.

I want to write today about how I was trying to communicate with others before my keyboard.  I had no method to communicate until I was ten.  My Mom saw things in me that made her believe I was intelligent and that I needed a way to express myself, but she couldn’t get the schools to agree.  Since they had all the speech therapists they made many decisions.  They made decisions that kept me locked up inside my body.  I went to see a team of therapists to work on a communication system for me before I was ten.  We had over 20 visits at a hospital.  They were trying to help me but because Rett Syndrome has a mind of its own, I couldn’t show them each time that I went there, that I could independently touch buttons or a keyboard or a screen.  On my good days when my movement was more controlled, I could do really well, but they needed more proof for us to get the money to buy the equipment.  Even with my best days, it was really hard for me to touch the screen just right.  

I was screaming inside. I knew what they were thinking.  I heard what they said.  I gave them my best efforts to show them I was in here, but it didn’t happen.  Even after all the appointments and all the trials I still didn’t have anything I could use.  I know the therapist was trying which was different than what I got at school, but I felt so lost.  This was before I had a diagnosis of Rett Syndrome.  I doubt that it would have helped me for them to know what I have. I have written about this on my communication page. 

 

My first walker. I couldn't walk much but I could stand for a while.

 

My Aunt Martha was my first caregiver starting at age 5. Here we are together at 6 years

I just wanted to say here that if others had believed in my intellect when they did their evaluations, I would have felt more calm.  But because I was stressed hearing what they were saying and how they assumed I was a small child in my mind, it made me want to cry. Instead of being free I was stuck trying to show them I was capable, and that it was just my body that was not working for me. 

When I am stressed I do more chewing, so my hands are constantly grabbing for my bandana or whatever I can reach to chew on, and I hyperventilate more.  It’s hard to focus when I’m hyperventilating.  It’s not something I’ve been able to control.  Just thinking about those days is making me do more chewing, drumming and hyperventilating as I write this.  It’s hard for me to type without lots of stopping.  I don’t like it!!  It’s hard for my mom or any other person trying to facilitate my typing.  The more stressed I get, the more I hold my breath, so I am going to quit today.  But I wanted to share this memory because I know other people who have Rett Syndrome struggle with these things too.

 

My sister Leah and I with my first keyboard in December 1995

 

It was a great Thanksgiving. I had just been given a way to communicate that worked for me. I was thrilled. My life changed in one day!

I will write more later.

Love, Karly

 

 

 

This was at my grandparents cabin when I was 18 months old.

 

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Minnesota Women’s Press is Going to Publish my Story!!

March 3, 2011 · Filed under CD production, Composing for piano, Disability Awareness, Music & Art, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

I got an email yesterday from the editor at the “Minneosta Women’s Press” that they are accepting my story, In My Own Voice for their April publication.  I am so thrilled about that!!  It’s so exciting to me because to not have a voice is a painful thing, so when we discovered a way for me to write, it has given me my own voice.  I feel so thrilled that my voice is honored by others and that people are interested in what I have to say.  It gives me so much much peace.  My body is so excited I feel a little overwhelmed today, but I am happy.

I asked my Mom to put some information here about them.

Love, Karly

Web: http://www.womenspress.com
Address: 970 Raymond Ave., Suite 201
St. Paul, MN 55114
Telephone: 651-646-396
Minnesota Women’s Press, Inc.

Changing the Universe through Women’s Stories
Fabulous, feisty and in our 26th year, the Minnesota Women’s Press is an award-winning, women-owned and operated, independent publication with a tradition of excellence in publishing what Minnesota women are saying, doing and achieving. Circulation is 35,000 with a readership of 80,000. It is distributed free at over 500 metro locations and greater Minnesota locations every month.

 

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