Archive for Facilitated Communication

My CD is Coming Alive!

Barbara, Karen and me at our first meeting together

I am so excited because yesterday I met with Barbara McAfee, my music teacher, my friends Margie and Karen and my parents. Barbara is a musician who speaks at conferences and is a piano player and songwriter.  She has 6 CD’s and says each one of them is a child to her.  She was inspiring.  One of her goals is to help women find their voice.  When she heard about me she was very excited and wants to help my music get shared with the world.  She travels a lot and talks to people everywhere.  Places that I will never go. She grew up in the town where we live and used to spend a lot of time at the library where I love to go and write.  She uses the studio that we went to a few weeks ago for her CD’s.

 I loved the ideas she shared.  One of them was to create a documentary of the recording and a little more of my story, because my strength is often low, and to have to go to events where I am suppose to speak is really hard for me.  I get overwhelmed by large groups and lots of sounds, so she thought that having my documentary might make that easier for me.  She knows a lot of people that she thinks will be very happy to help with this.  So we are moving ahead, and I am so content in my heart.

There is something that I want to share about my music and how I feel about giving it to others to enjoy.  I started composing with my teacher Karen Bohnert nine years ago, because she knew that there was a lot of music in my family. My Mom, my sister and my Dad are all very musical.  I write every note with Karen.  My family is not involved in any part of my composing.  I have titled the songs with my Mom’s help in facilitating, but beyond that they rarely hear my song until it is completed.   Karen has worked so hard to make my songs sound exactly like I heard them when they were given to me by God.  He makes them so sweet and memorable for me that I hold them until it is done composing.  The one we are finishing now has taken over a year. 

I do not share my songs to become famous.  I share them because people are so inspired by them.  My hope is that when people hear what I have composed that they will be inspired to discover what it is that they were created to do on this earth.  I feel that everyone has a special gift that God created in them.  If they don’t share it with others we all lose out.  Everyone has something unique to offer this world.  Mine happens to be music and I feel so great when I can share it.  I will keep everyone informed through my blog about what is happening with my CD’s.  It sounds like we might be able to start recording in January. My sister Leah and I will be together in a couple of weeks.  She will be working on her Viola part for two of the songs.  I love how this is happening and I feel so alive, even when I am struggling like I have been in my body this past week.  I hope all my Rett friends will feel my love when they hear my songs. 

 With great love,

Karly

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Having Big Dreams

I want to tell you today that I have so much hope for my life.  I remember when I was younger and how hard my life was, and how much pain was in, and how sad I was.  Nothing seemed hopeful. Before I could type I had no way to let those around me know what I needed.  It was so hard because I was the same person inside then, that I am now.  I have written many things on my blog about how difficult that period of time was in my life.  I don’t want to focus on that today.  The only thing I want to tell you is that girls with Rett Syndrome are waiting to be freed.  Of the girls I know who live with Rett we all are very different in our interests and gifts, but we all are very gentle and have giving hearts.  We are waiting for someone to believe in us, to give us tasks that are meaningful, that even though their bodies are giving them lots of trouble their minds are capable. 

I want to share with you some of the writings I have submitted for my event in November.  It is a community event where adults who live with some type of disability, are able to share their writings and music.  This is my third year. I submitted four pieces and all four were selected.  My latest song is not ready to be played yet, but it will be when we go to the recording studio. 

I am so happy today. I am sending a big hug to all my Rett friends. Don’t give up.

Love, Karly

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Riding Chester with my friends Amy, Bill and Laurie

Here are my four writings

I Am

 In the quiet of my heart I am slow

I breathe deeply

I sit quietly

I think freely

I don’t struggle

I love deeply

I contribute

I participate

I speak in ways others can hear

This is who I am

I am more than my body

 Karly Wahlin

September 2009

Edited

My sister Leah and I by the St Croix River

 If we Could Buy Some Love

 If we could buy some love our world would change

It wouldn’t cost us much

There would be no risk, we would feel no pain

We would give freely

 Our hearts would not be harmed,

If we could buy some love, we would be free

Our minds would be obsessed with making it fair, our hearts need no involvement.

 No one would go unnoticed

Stands could be set up to buy love conveniently

On our errands

Coming home from school

 Over lunch,

On our vacations

 at the hospital gift shops or retirement homes

 Love would be fair to the unlovable

 The outcast

 or folks who don’t fit in

We could get it easily

There would be no risk

 No pain

 No loss

 No regret

 Only the ability to make money to buy more love.

 Karly Wahlin

September 2009

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Amy and I have typed together for 12 years. I love her!

 In Honor of my Mom

 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

 Karly Wahlin

October 2009

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My Mom and me on my birthday talking with my family

I’m Ready for Life to Begin

July 4th 2008

I’m sitting here on the deck with my Mom and Stepdad trying to calm down. I’m really excited because we are going on a paddleboat ride on the beautiful St Croix River. I have sat on the rivers edge many times and watched the paddleboats go by. It is the first time I will be one of the passengers. The ride is a gift from Mom and Gregg for my 23rd birthday!

If I knew what I know now, when I was a little girl, my birthdays would have been happier occasions for me. I didn’t know my life could be a gift to others, especially to those who are struggling like me in a silent body, to be understood. If I had known that my lifes’ story could bring an understanding to others, I would have felt more joy about being alive. I feel so joyful today, that there are those whose lives are a little better because I have put words to their experience. What I have shared, even though hard to hear, has been kindly received.

I don’t think I would have been so fortunate if my mom and stepdad wouldn’t have kept encouraging me to write, and my good friend Sandy who has been one of my greatest fans. I share this today, because as I sit here, I am struggling to breathe.

Part of my condition of Rett is disordered breathing. Unlike most people who don’t even think about breathing, I think about it every waking moment. My body doesn’t breath on its’ own very easily. I turn blue so often during the day that it is a normal color for me. My hands are a deep purple right now. I’m ready to breathe normal. I wish I could. It’s one of the things that keep me from enjoying my favorite activities. I am unable to control it, but my body stops breathing every couple of minutes. Sometimes I breathe normally in seconds, other times I hold my breath until I pass out. It is not scary for me anymore, but it makes others around me anxious and uncomfortable. ‘It is hard to see someone turn blue ,’they say. I see my hands turn blue, but they go back to pink. When I start breathing again, I hyperventilate because my body is trying to gain more oxygen. I cannot control it: my arms flail and my legs go stiff, and I look frightened.

The reason I share this today is because we are going out on such an awesome day into the community, where I’m noticed not for being a wonderful young woman turning 23, but as someone who has a problem, and who makes their day uncomfortable.

I love life and I want to enjoy myself like everyone else. So I will try to ignore their discomfort, but I am very aware of it. It makes me even more uncomfortable. I want them to know that I am NOT who they think I am. I am out having a great birthday gift with my Mom and Gregg! It makes my life valuable to know that they are wanting to be with me in these situations helping me have a blessed life. It’s not an easy life, but it is a great life.

I speak for many who are experiencing this around the world. I can only imagine what is happening in their lives today. I want to give them a huge hug.

Karly with love

 

 

 

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My visit with Susan Norwell

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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My Life After Graduation

I left high school in the Spring of 2007.  I was so afraid of leaving, because I had so many friends and a place where I found acceptance.  I wasn’t unusual there.  I didn’t get noticed because of how different I was.  I spent many years there.  It was all I knew. 

I remember when my sister graduated from high school.  It was an emotional time for her, but it also a time for celebration.  She had a lot to look forward to.  She wasn’t afraid.  She didn’t have any physical reason to expect to need care for the rest of her life.   She had choices.  I was so anxious about graduation that I threw up just before leaving for the ceremony.  I knew some of my friends who had graduated and I had never seen them again.  I tried to keep up with them, but their lives went in another direction. They moved into grouphomes,  went to adult day programs or work programs, and their lives became involved with new friends.  

This may not sound all that different than the average persons experience, but for someone who is unable to speak, so I can’t make phone calls on my own and I can’t drive anywhere to get together with friends, it is a huge barrier.  My new friend that I met at camp this past summer chatted with me on Facebook yesterday, but it was only because my Mom was here and on Facebook at the time,  that I was able to visit with her.  She struggles to type easily, and is not able to drive herself so our chances of seeing each other are very few.  By the transportation and schedules are considered and our health and energy limitations, let alone all the scheduled appointments to keep us healthy, and our weekly activities to keep us occupied, our lives become pretty predictable. 

I sit here smiling today, because with all of the challenges I face to keep in touch with friends and have a life of value, I love my life.  It is a life worth living for me.  I am with my Mom most days during the day hours, so we are able to go places and I am able to communicate with her help.  I am working on helping researchers study Rett, I go places that are interesting, I help others understand people like me who are non-verbal and silent, I speak at events when I am invited, I compose music that I can share, I ride horses at my friends house.  I was able to spend the week-end with my sister Leah.   I am outside as much as possible.  The group that we are starting is expanding into our home town and the opportunities we have to serve others and also have artists and writers work with us, gives me much to be glad for today. 

I want to tell others who, like me, live with a body that creates many challenges for them to not be afraid.  There is life after graduation and for me it is a great life. 

Dream big dreams.  Dont’ let others determine who you are by your diagnosis.  Your life is so much bigger than the limitations of a diagnosis.  When our lives have great things going on, our spirits are free, and we have hope. 

I send my Rett friends a big hug today.

Love, Karly

Working on Australian Rett Research papers

Working on Australian Rett Research papers

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My sister Leah and I at Pioneer Park

 

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Rett Researchers and my Role

I’m excited today because I have been contacted by three different Drs in the past couple of months who are doing Rett Research.  One was from Italy, one is from Australia, and the others are from our state of Minnesota.  I haven’t been able to do the paperwork yet, but my Mom and I are starting on it today.  The Dr from Australia is Dr Helen Leonard.  They are excited to have me answer the questions because it is the first time they have someone who has Rett Syndrome and can answer their questions.  It is fun and scary for me, because I want to help them. It is hard for me because so much of my life I wasn’t believed so the difficult questions about the details of Rett Syndrome were asked of my Mom not me.  I am so honored that they are interested in my answers. The group from Minnesota sent a huge package for us to fill out.  They said I could answer some of the questions too. Their questions include some of the tests that were given to me in school.  I hated them.  They always show those of who have many physical challenges and are non-verbal to be very mentally impaired.  I don’t want to continue that belief about girls with Rett.  They haven’t been as easy to convince that I could answer most any question they would have about my life with Rett, but I do not give up hope. 

I know that for me, because it is easier for me to communicate, that my job is sharing my life and story so I can help others who live with this disorder.  I don’t want to just live for me and when I die to have a world that is the same place it always was for my silent Rett friends.  I love my life even when it is hard.  I feel respected and honored today.

 Love, Karly

 

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My View from My Eyes

16 months old with my glasses

16 months old with my glasses

 

 

My sister reading to me
My sister reading to me

My Eyes From my View

 Last week, I had a doctor appointment to see my eye doctor.  I have seen him since I was a baby. I got my first pair of glasses when I was 8 months old.  During this visit we talked about how people who have neurological disorders may see the world differently than others who don’t struggle with how their brain receives visual information.  My doctor told me that he has made some assumptions about what people with neurological challenges see, but he has not had much input from someone who may be able to share their experiences in detail.  He asked if I could write it for him, so I thought it would be interesting to put it on my blog, since other girls may experience the same thing.  I am really myopic, so my clear vision is within ten inches of my face. 

 I cannot wear eyeglasses for two reasons; one is because they feel so strange and irritating on my face.  I started wearing them as a baby.  I didn’t have the coordination to remove them when I was very little, so I couldn’t get them off. But now, on most days, if someone puts glasses on my face, I can’t get them off fast enough. The second is because I can’t handle what happens in my brain when I wear them. Recently I was able to wear sunglasses for about 20 minutes, but they didn’t correct my vision.  It felt good to not have the sun be so bright, but they irritated my face. 

 I wore eyeglasses until I was five. I couldn’t see any better with them on, than I could with them off.  I hated the way they felt, but I couldn’t remove them until I got a little older.  I took them off and chewed on them so they always had chew marks on the glass.  I lost many pair because they got dropped and my parents didn’t see them fall.  The funniest time was when I was about three.  I was in the garden with my mom in my wheelchair.  It was by the pond and there were ducks playing in the pond.  I had dropped my glasses and it wasn’t until my Mom saw the ducks playing with something that she realized it was my glasses.  They took them into the pond, and that was the end of them!

 My doctor said he has made some conclusions about how people with neurological disorders handle information they receive from their eyes.  He has assumed that for many people they can handle information if they don’t look directly at something, but they see it out of their side vision.  It is true for me. If I look directly at something it is only briefly, and only on days I am able to do it.  It is physically painful to be forced to look at something directly in front of me.  I am better able to handle it if it is on the side of me.  I often move my head back and forth in order to not get too much stress from looking directly at it.  It is hardest with people.  They often think I am not paying attention if I don’t look directly at them.  I remember many teachers and therapists insisting that if I didn’t look into their eyes, that I would not be paying attention.  Nothing could be farther from the truth.  I can handle most situations better if I am not forced to look at something. I can see much better and my brain is not stressed if I can use my side vision. There is something inside me that wants to run away when I am forced to look at someone who is inches from my face.  I am sure that many other girls with Rett struggle with this too.  If I look directly at someone it is because I am able to at that moment. But if I’m not able to do that, don’t assume I’m ignoring you.  I am very aware of everything that is happening around me.  If I am fiddling with something it helps to calm my brain.  I can do both.  I don’t need to be forced to look in order to understand.

 My eye doctor said he had some ideas about how some people with neurological disorders process information.  He described looking directly at something is like sand being poured through a funnel.  He said if it is poured slowly it goes through the hole, but if it is poured too fast it gets blocked. He is assuming that looking directly at something is like sand being poured too fast into the funnel. We are not able to handle that much information coming into our brains, but if we use our side vision the information is like sand that is poured slowly.  It comes to our brains slower, and we can handle it better. It is a good description for me. 

 Our world is so full of interesting things to look at.  The trouble is most of us are expected to be thrilled with lots of activity. To me it often gets overwhelming when there is a lot going on.  I can calm myself sometimes by playing with a fiddler.  Today I am able to focus if I have a fork in my hand.  It makes my brain feel relaxed.

 I went to a dance recently with some friends.  It was very loud and there were lots of people.  One of the men was in my face a lot. I couldn’t tell him to back off, and he was just being friendly, but I would not have chosen for him to be that close.  It was a very overwhelming environment, but I could handle it that day. There were a lot of lights, which distract me.

  I read something this morning with my Mom that Carly Fleishmann wrote. It was about how she sees things. She says that when she looks directly at someone, she sees a thousand pictures.  I think that’s a good description about how my brain sees things too, if they are right in front of me.

 Love, Karly

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A Life with Purpose

 While I was at camp, there were some people who wanted me to share my messages on my blogpage. I thought it might be better if I combined some of my thoughts.

The theme for camp this year was Molded for Purpose. When we are disabled we are often seen as people who need services and support and require a lot of money and take away from society, but it’s not how we are seen by God. I believe every person has value and was designed by God. If we are not aware of our value by God, we fill our lives with things that are entertaining and keep us busy and satisfy our own interests. But God sees all of us and has a place for each of our gifts and talents. He made us with special interests. We are all different. My talent is very different from someone else’s, but God gave that talent to me and only he knows how it can be used. He has a purpose and a place if we are open to it. Many times we get God confused with church. Church has its place, but it’s not all there is to God. People created church as we know it, but God created the people first. He knows us. If we were all alike, even God would be bored!

It hasn’t been too many years since God showed me how he could use the gifts he gave me. In 2000 I composed my first song with my friend Karen helping me get the song out on paper. Each year since then I have composed one song, because it takes an entire year to finish it. I didn’t know how God could use that. I was glad for the ability to compose music, but God started to use my songs to inspire people. I first noticed it when I shared my songs with the people at school, and how much it encouraged them. They were so eager for more. I don’t take a lot of credit for them. God gives me a song that is so strong it stays in my mind until I am able to get it out, one note at a time. It takes so long because I can’t play it myself, but Karen works really hard to make sure it is exactly the way I think it needs to be. It is so fun to be able to share those songs with others because they are a gift from God.

For those of us who live with great physical struggles this world does not value our lives. It is evident by the decisions that are made everyday on this earth. If that’s all there was most of us would find little reason to live. Because we are seen and valued by God who knows us better than any human could, our lives have purpose. It is not an easy life, but I don’t fear either living or dying. I have been close to God most of my life, and when my time comes to die, it will be a great thing. I am not going home to a stranger, but to my best friend. I talk with God about everything. It is not hard to be understood when I talk with God. I don’t have to use fancy words. I don’t have to struggle with it being a hard day to put my thoughts together. I am not limited by my ability to type that day.

I have value to God. He has created me with talents that only I can share with this world. I am not unique. I know that everyone has things they were created for. If we block what God has gifted us with, we not only limit ourselves, but we limit how God can use our lives. It is good to discover who we are in Gods eyes, not how limited we are by many in this world. We’ll discover that our lives have been molded for purpose. If we find our struggles in our minds and bodies to be all there is, it is a limited and hard life.

Love, Karly

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I Sit Here Smiling

 

 

Here are some of my memories of camp in Iowa.

 

 

There was a dance

There was a dance

I have never been in a golf cart.  I loved it.

I have never been in a golf cart. I loved it.

Emily has a rare talent.  The basket is filled with my laundry

Emily has a rare talent. The basket is filled with my laundry

Ashley was so kind to my new friends

Ashley was so kind to my new friends

My Mom read my script.  I had worked on it for 3 months in advance.

My Mom read my script. I had worked on it for 3 months in advance.

My Mom and Gregg love me so much. I was so glad to be there with them.

My Mom and Gregg love me so much. I was so glad to be there with them.

I was able to be in the last worhsip time with my friend Deb.  Scott played such beautiful music.

I was able to be in the last worhsip time with my friend Deb. Scott played such beautiful music.

I have joy today.
Love, Karly

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With Gratitude and Peace

I got home with my Mom and Gregg last night from camp.  I have been trying to find the words to share with you about what it was like for me there.  It is impossible to express how much joy I feel to be honored in that way.  There was so much respect and kindness and love from everyone I met there.  My health was great, I felt good and I slept well while we were gone. 

For those who have a life that is noticed by others for their wit and charm and intelligence, it may be difficult to understand just how amazing my experience this week has been. I am not noticed for any of those things to the average person. My movements, breatholding and chewing bring attention to my disability instead of my heart. I have never had four speaking times together in four days.  Dave and Margie, the camp directors believed in me.  They gave me so much respect. God was evident to everyone there.

I need to give you a word picture to help you understand what it’s like for me. These are some words that express my gratitude to God and all the people who were involved in making it possible for me to present my message.

Love

peace

respect

sacrifice

gentleness

gratitude

joy

honor

beauty

health

tears

more tears

tears of joy

open hearts

willing spirit

tender moments

freedom

thoughtfulness

laundry angels

sweet

best friends

fun

acceptance

warmth

laughing

helpful

great joy

spirit

I couldn’t have done this without the help of two wonderful, kind and loving young women who went with us to camp. Ashley and Emily were perfect there. They were so thoughtful and excited for me.  We all were blessed so greatly.  If I didn’t have a Mom and step-dad like I do, none of this would be possible.  It is because of them that I had this opportunity to share a message that I was given by God. I am so thankful today for what happened and how God used my story and my life to give hope and inspiration to many people.  It’s not because I’m so amazing, but because I’m willing that this happened. 

I sit here smiling.Love, Karly

My favorite memory

My Favorite Memory-I sat on the deck of my beautiful cabin and communicated with some other adults who live with great physical struggles and depend on devices to communciate

 

The artist Bill Butler created this painting with the help of every person at camp-he was so loving

The artist Bill Butler created this painting with the help of every person at camp-he was so loving

 

 

 

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Going to Camp

I am leaving tomorrow morning to go to camp for five days.  My family is coming with me, and two of my caregivers, Ashely and Emily.  I am very honored to have been asked last winter if I would be the chapel speaker for the adults with physical disabilities.  I have four talks ready to go and I have asked my mom to read them for me.  I don’t feel anxious about it, but I am very happy.

The camp directors have been so encouraging and excited to have me come and talk. The theme for the camp is “Molded for a Purpose.” I thought it would be good to share some of my beliefs about how God molds each of us for a purpose.  I shared this with the director last winter.

Love, Karly

God has a purpose for every life.  If we ignore the purpose He has given us, our lives are so much less than they could be.  For those of us who live with great challenges in our bodies and minds, it may be harder to find the purpose God has given to us.  We can get so caught up in anger and sadness and isolation that we don’t give God room to help us figure it out.

 I don’t believe God has created us to have accidents and birth defects, and illnesses.  That is something that has happened because we live on this earth and are not yet in heaven.  There are so many things that are not ideal here on earth, but the great thing is that when we allow God into our challenges we are even more blessed than the average person would be.

 I have a wonderful relationship with God.  He has given me perspective that I doubt I would have if I were a typical person.  One of the things He has created me to do is to share my story and give people hope and insights that only a person living with my disorder can give.  He has given me the gift of music.  I have been able to compose the songs He has put into my mind.  Through great effort, my music teacher and I, bring that music out so others can be inspired.  I hope they are encouraged to follow their hearts passions, by hearing my songs.  Because of God’s place in my heart, I feel great love and compassion for others.  While that may not seem like a gift, it is one of the best things to share with others.  It is simple.  It warms their hearts to love.

 I have never said a word on this earth, other than the sound a cat makes, when I was a baby, but it hasn’t stopped God from working through me.  God is my strength.  He has molded me for His purposes, and I find my best days are the ones I wake up and ask God what He wants me to do that day…and then I do it.

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