Archive for CD production

A Miracle Happened!

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

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My Story

This is where I wrote this today. Beau was very curious about all the equipment.

While I type my Mom reads my words into the recorder then she types them into my computer.

I wrote this today for a group of parents who have daughters with Rett Syndrome. It might help some people so we are going to post it on my blog.

My Mom has told me about this new group and that I could introduce myself when I was ready.  Today is a good day and I am ready to tell you of my story. I hope that it helps you dream big dreams for your daughters who have Rett Syndrome.  I am 26 years old.  For most of my first 12 years we had never met anyone else who was like me.  I didn’t understand what had happened to my body.  It was a very hard life for many years.  I suffered a lot of pain and I wasn’t given opportunities at school to show who I am inside. I lived with no way to communicate my needs or thoughts for 10 years.  I was trying to tell my Mom and others around me that I was in here and wanted to be understood, but I couldn’t communicate that without extra help. I gave so much of my energy at that time.  I was sad and scared and I cried a lot.

Since we had no idea about Rett Syndrome my Mom just kept trying everything she could think of.  We read many books together with my sister who loves to read.  We listened to books on tape, we listened to the radio and while my Mom played piano I sat on her lap and watched the keys.  I loved music.  We did this everyday until I was too big  for my Mom to play around anymore.  I haven’t had an easy life, but I have been surrounded by lots of love.   My parents and sister are very musical and I was surrounded by many different kinds of music.  I didn’t get much hope when I was in school but I got hope from my family.  My mom believed in me and kept trying so many things to help me with my health and with my intelligence and with communication.

 When I was 10 years old my Mom and I read about a man who lived in an institution most of his life.  We read it together and I remember sitting so close to the words and watching my mom read the mans story and how he was able as an adult at 36 years old, to begin typing.  His family gave him a chance and he was able to leave the institution. He even wrote a book.  He needed help with his arm to type, because he couldn’t control much of his movements. But with the right kind of help, he showed that he was very intelligent and just waiting for someone to find out.  I loved every word from his story! 

My Mom didn’t know at that time that I had taught myself how to read by sitting on her lap and looking at the words as she read for so many years, and I figured out how to spell most words. So by the time I was given a typewriter, by a woman who believed in people like me, I could type words. I typed very slow. Many times I couldn’t type no matter how hard I tried because of my movements that I couldn’t control.  But today, if you see me typing, you will see that I type very fast.  I have been so fortunate. Much of my life has changed so much.  I still struggle everyday with Rett Syndrome.  There are times I can’t feed myself, times when hyperventilation and breath holding make my days really hard, times when seizures stop me, times when I have terrible headaches, or frustration I can’t control and anxiety that makes me feel crazy inside.  Nights when I can’t sleep. Days when I can’t stop chewing, but with all of this I have a blessed life.  I have a life that has great times in it.  I am a speaker at times.  I have written for a magazine.  I have my own CD of music I have composed for piano.  I am sitting here today with my miniature horse sleeping by my wheelchair.  I have wonderful caregivers in my life, who have given me opportunities, because of their care for my body to be as healthy as I can be.  I give them lots of credit because my family needs lots of help to care for me.  

So today I hope you hear my story and are inspired to believe in your daughters.  Because if you do, they will show you who they are and what they are able to do.  Don’t believe that the tests are a good indicator of their intellect because the tests I was given in school show that I am profoundly mentally impaired.  It’s not true and those tests caused me much trouble in my life.  I can’t show you my intellect but if you believe that I have it, you will change most of all because you will try many things to help me become the best person I can be.  That was my Mom’s belief and it worked for us.  I have not forgotten everyday the sacrifices and struggles we have had.

Please don’t let Rett Syndrome be the only thing that is said of your daughter.  It’s part of who I am but it’s not all that I am. 

Love, Karly

I was so glad to meet Susan Norwell when she came to my house

January 2010:
I asked Susan Norwell if she would be willing to write something for me to put on my blogpage.  She has worked for many years with people who are challenged with communication.  I had a great visit with her last Fall.  She and I have written to each other by email since then.  I am excited that she believes in Rett girls.  We need people like her to believe in our intellect and not get stuck on our inability to express ourselves easily.
Love, Karly
Dear Karly Bloggers,
I have been working with girls/women with Rett for almost 30 years.  They have all taught be so much, that I wish I could go back and help those first two babies I worked with in 1980.  I would have a lot more to offer them now.  What I have learned, most importantly, is that Rett is definitely a motor disorder and the motor deficits that are affecting cognition is what we should be concerned about.  Instead, professionals dwell on the “apparent” cognitive deficit (evidenced by the lack of motor response) and tremendously undershoot these girls.
I have lost count of the number of girls I have worked with, but this I know for sure….they are cognitively more capable than they are able to express and it is the lack of skill on our part that most hinders their development.  So when I was asked to visit Karly to witness this young lady who was able to ‘Blog” and create music using FC, I was delighted and looking forward to learning something new from her.
For years I have utilized Facilitated Communication with my students with autism.  I was trained by the original Biklen, Syracuse crew back in the early 90’s.  I work hard to decrease support as soon as possible and many of my students have “proved” the typing is theirs by reporting experiences I did not partake in and by continuing to provide correct answers even after I shield myself from their choices.  I never want to influence a student as that would be a dishonest portrayal of their abilities and would be unfair to all involved.  I currently use FC with a young woman with Rett, who types more slowly than Karly, but clearly expresses her ideas and intentions using an AAC device called the tango!
Karly communicated via a keyboard facilitated by her mom.  She was able to answer my questions and make appropriate comments throughout our visit.  Her communication would sometimes halt as she lost the motor plan. In my professional opinion, this proved to validate her communication as those stops are consistent with the disorder.  Karly had wonderful insights, a great sense of humor and spoke in a manner that is more like writing than typical speech.  This is again something I have noticed with other students who use FC.  They typically don’t use the slang we all do and are more precise in their communication, which is more similar to how we communicate in writing.
Karly is very blessed to have a mom that believes in her and others who support her communication and creation.  There are so many girls who are not this fortunate and are still trapped by others’ low expectations.  Please don’t leave any method, style or type of communication untried. We owe it to our “girls.”
Susan Norwell M.A.
Educational Specialist (Rett, Autism

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I Love Our Piano

I remember sitting on my Mom’s lap while she played our piano.  The youngest I can remember is 9 months.  I was told she held me everyday she could play.  I sat in front of her until I was too big for her to play around me.   We took a few pictures but it usually happened when the only other person there was my sister Leah. She is a great piano player too.  I remember when I got older, about 3 years old I think, I could sometimes get my hands to reach for the keys.  I would drum them with my left hand just like I do to this day.  My Mom says it looks like I’m tickling the keys.  

4 years old

This memory came back to me this morning when I asked my Mom to play a song on the piano.  She doesn’t play often anymore like she used to.  She played a song I used to hear her play, “Love Can Build A Bridge…tween Your Heart and Mine.”  I love that title, because it’s what music has done for me.  It has given me a bridge.  Something that can cross over a huge barrier that was caused by Rett Syndrome.  I don’t have words, but I have some songs that have gone into the world through me.  I thank God for those songs.  They have given me a message to share with the world.  That message is: don’t assume that people who can’t speak, lack intelligence.  

I struggle daily to breathe, to feed myself, to do what others do without thinking about it.  I am fortunate because I can communicate, even with Rett Syndrome, but it is a hard life.  Today, I feel glad, because even though I’m struggling to breathe normal, I feel happy.  I am surrounded by flowers.  I have family and friends who believe in me.  I have hope that this world’s heart is changing towards girl’s with Rett Syndrome, because of those who believe and try to help us have a great life. 

I send my music into the world today.  I love this song.  I composed it and feel joy every time I hear it again.  My sister Leah is playing her viola for this song.

For Real Friends

In the studio. Gregory Thiesen played my songs and Leah played her viola. My music therapist, Karen Bohnert and Barbara McAfee have given me so much hope.

Love, Karly

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Easter Blessing

Easter Blessing

The hope in every heart is peace
giving freedom to dreams

Inspiration freely given to those who see
To those who have listening hearts

We are not alone here, living lives without purpose
in homes without contentment
living in quiet solitude

rather,
look
hear
embrace
love
extend hope

We are not alone
We are part of the divine.

Karly

April 22, 2011

I want to share my song: When I Get To See You:    08 Track 08


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

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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My Voice paper

My friend Ashley and I on our way to camp last summer. That's a fun memory for me.

 

It is snowing in Minnesota again! Last week it was beautiful and we lost a lot of snow because it melted.  But today we are suppose to get about 15 inches again.  It is not what we wanted, but we are lucky that we have a warm house.

I wrote something last week for the Minnesota Women’s Press.  My music producer, Barbara McAfee told me that the theme of the newspaper for April is Women and Voice.  I had 450 words that I could write, so this is what I sent in.  I don’t know if it will be chosen, but it was fun to put my story into that many words.  I love to write. It helps my body calm down to get my thoughts out.  I remember how hard it was before I could communciate, so I really feel the struggle in my heart for those who can’t communicate.

In My Own Voice

I have lived for 25 years.  Only my mother has heard me speak.  I was nine months old and I said “meow” when we were reading a book together. It was the first and last word I ever spoke.  I tried really hard to speak, but it has not been possible for me because of Rett Syndrome.  After years of therapy and questions, we got that diagnosis. Many things changed.  It was a burden to be a young girl with Rett Syndrome because little was expected of me by everyone but my mom.  She knew I was in here.  She believed when others talked about her behind her back.  I heard them.  My story is one of great joy and happiness because, in spite of all the things that have been taken away from me in my life, I have had many great gifts.

I began working with my music therapist when I was 14. She believed in me and gave me a voice by developing a way for me to compose.  I didn’t know if it would be possible for anyone to hear what I heard in my head.  But with much effort a song came out. It was heard by others for the first time.  I cannot use my hands to play piano. I cannot hum the song I hear in my head.  I cannot write it down, so each note is slowly and carefully chosen by me from cards that my teacher places in front of me.  Somedays it’s impossible for my hands to work. After many months of effort, my song comes to others’ ears.

It’s been many years since we finished my first song, but that song changed my life.  I was no longer just the young girl with the diagnosis of “profound mental retardation”.  Those who believed, heard my voice and saw me in a more loving way as someone who had lost so much because of a disorder she never chose.  I have finished nine songs. The best day of my life was when I sat with my family and producer in the recording studio, surrounded by people who felt my voice needed to be shared.  I heard my songs performed by a wonderful, professional pianist.  They brought my music into the world on a beautiful CD, that I titled, “In My Own Voice.” My sister’s viola added depth.  I hear more music yet to be composed and I feel content.

I hope when you meet someone who is unable to speak that you assume they are intelligent.  It may change their life to have just one person believe.

Karly Wahlin

 

I’m eager for Leah to come for a visit. This is her and Ludo at a lake near our house last summer.



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Hearing From Others

This tree is outside our living room window

This tree is outside our living room window

Winter in Minnesota

I have had an awesome week!  I heard from some of my best friends.  I got emails and cards and phone calls from people who I love and don’t often see.  I even Skypped with Leah and my family on Christmas day. We can see each other really good and I love that.  I won’t be able to go to her house because it is too far away, and I can’t travel very far without getting exhausted.  So I am glad I can see her on my computer.

I wanted to tell you that people who are non-verbal like I am rely so much on others to stay connected with us.  It seems like an obvious thing but I think other people underestimate how much much their attempts at communicating with those of us who are non-verbal, mean to us.  I am not able to pick up the phone and call and if my friends call me I can’t talk back.  I think that makes some people very uncomfortable.  But I want to have you know that any effort made to be in contact by mail, phone calls or a visit mean so much to me and I know to many of my friends in this world who are unable to talk.  We don’t care what you say but how you say it matters.  I hear people talk to those who are non-verbal like they are infants.  When that happens to me I am so frustrated.  What harm can come from assuming people who are not talking understand everything you are saying? I can’t think of anyone that would be offended or hurt by that.  Assume intelligence, it always gives honor and respect.

I was so happy that my friend and CD producer Barbara came to visit me yesterday.  We had a great comfortable time together and I enjoy hearing from her so much.  I was interested in her stories from this past year.  I love how she helped change my life by making my music ready for others to hear.

Barbara McAfee helped my voice be heard.

My friend Bethany who lives in Utah sent me a long email helping me understand what she is doing now.  I feel so much love in my heart for her.

It has been a beautiful end to this very wonderful and difficult year, to have so much kindness in my life.  My neighbors Sandy and Missy have blessed me so much because they believe in me and they talk to me like I am capable.  I hear from them about how much I help them understand and I feel so happy.

Love, Karly

Beau likes to eat the grass around this tree in the summer

 

 

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