Archive for Rett Syndrome Intelligence

Having Big Dreams

November 6, 2009 · Filed under Disability Awareness, Facilitated Communication, Music & Art, Poetry, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged

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 Year of Joy

November 3, 2009 · Filed under Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs, piano compositions · Tagged ,

I have been thinking about all of the things that have happened in my life this year. If I had imagined how much our lives would change in one year it would have been too big of a dream.  I am so glad for all the ways I have been respected and valued. My courage to share my story has given me so many opportunities that I never dreamed about.  I am sitting here in our library with me Mom writing this message.  This year started with a lot of discouragement and frustration.  The person I was counting on for my daily activities, left without even saying good-bye, it was a time of great difficulty for our family. But because she did that, my Mom is now home with me and I have the freedom to write and share my thoughts everyday that I am able.  I know that God has given me many opportunities that I never could have had without my Mom’s support.  I was able to type with my caregiver who left, so it was painful to have one less person to communicate with, but God has changed my heart about her. 

 I want to talk about some of the things that have happened this year because we were able to be together more and I can communicate freely with my Mom.  I have written for my adult writing class whenever I am able to do so.  It was hard when my Mom went to work during the day and I could only write in the early mornings before she left, or in the late afternoon when she came home.  Sometimes I wasn’t ready to type during those times, so it was frustrating for me. Because I was able to write I was prepared for my class. I could write my blog whenever I was ready, and I prepared my talks for camp for three months before it started.  I wrote lots of cards and emails.  About 30,000 people have read my blog this year.  I could not have imagined that before this year. We went to Duluth on a great family vacation and worked on my documentary.  It is not finished but it’s getting closer.  Now I am starting to focus on my CD and getting it recorded.

1st meeting at studio

1st Meeting at Wild Sound studio

My visit to the studio last week was wonderful.  Matthew and Gerard are so respectful and excited to help me share my songs with the world.  They have talked to a woman who they want to produce my CD.  She is a musician who has some of her own CD’s and is very excited to help me share my songs.  I have asked my sister Leah, to record with me so her parts are for viola.  She and I have not done this before so it’s very exciting for me.  Matthew was very respectful of me and wants to make sure that this is done exactly as I want to have it when it is finished.  They are going to film the recording and create a documentary of the process.  They said my story is very important to share and they want to create this film so others can see more of who I am.  This is so wonderful for me.  I have worked so hard to share the songs that I have been given.  They are not my songs. They are songs given to me by God.  It is not hard to share something that God has given.  It is inspiring to me when I get a new song but it takes so much time to finish it.  The one I am working on now has taken over a year and it is not done yet.  But God gives me a good memory so I can keep the details in my head until I am able to share them with Karen, my music teacher.  It is hard work for her and I, but I know that I am suppose to share the gifts that God gave to me.  I am eager to do that now. I have more courage this year than I ever have before. It inspires me to continue writing about my life because I know that even if it only helps a few girls with Rett that I have done what I am suppose to do.  Thanks for the kind messages you send to me.  It helps me to know that I can give other girls I will never meet some hope for their lives. 

 Love, Karly

  

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My visit with Susan Norwell

October 16, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged , ,

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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Happy Birthday Mom

October 16, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

55

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.

I love you Mom,

Karly

 

 

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My Life After Graduation

September 23, 2009 · Filed under Facilitated Communication, Music & Art, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs, piano compositions · Tagged

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

September 14, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged

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

August 23, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

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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An Adventerous Life

August 16, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged

I went to church this morning with my Mom and Gregg and heard a message that inspired me.  It was about having a spirit that is open to God and receptive. It was the way he described being lead by God.  I have written a number of blogs lately that give you a better idea of my spirit.  I focused for a long time on my physical body, because I hope it helps others who love a Rett girl, but now I think sharing my spiritual life is what I’m suppose to do.  I loved the message today, because when I live aware of God, my life is so much more interesting than if I focused on my physical being.  Giving my life to God, has made my days so much better. I don’t believe that most of the great things that have happened this year would have taken place if God was not involved.  I have no authority on my own.  God has given me places to speak, and music to share and people to love. I would never have been able to make any of these things happen on my own, because people who have my level of disability are not seen as someone who has a lot to say and insights into spiritual things, let alone a relationship with God.  I want to say that even though my life is not easy that I feel content and have goals, and as I sit here today on our couch, I feel love.  I don’t need to have a lot of things, but when I listen to God, he encourages me to connect with someone and when I do it, it is so amazing what happens.  

Love, Karly

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A Special Request

August 12, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

 

 

 

Beau came into the house to meet Deb because it was a hot day.

Beau came into the house to meet Deb because it was a hot day.

 I was so happy to see my new friend Deb this past weekend.  We met at camp in Iowa, and she was able to come to my house for a visit.  It was so fun for both of us to see each other again.  We both work hard to communicate, so it always takes time to get our thoughts out, but it was fun to be together.  While we were visiting we talked about something that both of us experience, and I know most people who have an obvious disability are very conscious of.  It is the way others who are not familiar with us act towards us.  It is often hurtful.

 

When we were little and people talked baby talk to us, it wasn’t unexpected, but to be an adult in your mind and still be treated like a little girl is incredibly hurtful.  One thing that often happens to those of us who use a wheelchair is people think we are hard of hearing and need to be spoken loudly to.  If we are also non-verbal, people are confident they have us understood as someone who is also lacking in intellect.  It is also interesting how people think that if they speak louder and slower, that we will be able to understand and maybe respond.  For me, in addition to being non-verbal, I don’t often look directly at people.  It is part of Rett where I feel overwhelmed if I look directly at someone.  If I can’t shake their hand, which happens most days, it is the final proof they need that I am a little low intelligent girl that needs their pity.  These are my words, not Deb’s, but as we spoke it was obvious that what we both experience is very similar. 

 If I could ask something of those who are interacting with someone who is non-verbal, it is to always assume we are intelligent and that we have very good hearing.  You can speak to me like you do anyone else my age.  I am capable of understanding.  It never hurts anyone to assume intelligence, but it can cause so much pain to assume they are lacking.  I am aware that most people are uncomfortable if they are talking to someone who cannot communicate back to them, but it is so appreciated by me when people get past their discomfort and just interact normally with me. 

Love, Karly

Deb and me

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Having a Purpose and Direction

August 11, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

This is a tribute to Eunice Shriver who spent her life giving dignity and purpose to people who have disabilities. To honor how she spent her life thinking of what she could do to make a positive difference in this world, and taught her children and others how to be less selfish and more honoring of others everywhere in this world.  I never knew her, but I respect her vision for her life and what she has left behind that gives many of us hope.

 I have been thinking about something this week that I think will help me and may help others.  It is related to my talks at camp about being created for purpose by God.  If we determine with God what we are to do for our lives and don’t have any direction we can lose the vision he has given us.  I don’t want to lose the vision that I have through getting too busy with the things that make life hectic.  If all I did was the things I need to do everyday to be healthy it would be an unfulfilled life. 

 I have so many activities to keep my body well but I still struggle most days. So if I depended on  those things for meaning in my life I would be very depressed, because no matter what I do I can’t stop the hyperventilating or breath holding or physical pain that I experience in my back and neck everyday. Since I try not to focus only on those things I have a life that I love.  I plan on living it fully while I am here on earth. It is not always easy to push myself, but if I sit around and do nothing, my life is pointless.  I try to get up everyday and pray and ask God what I need to do that day and then I do it.  God knows me better than any human so he won’t ask something of me that is impossible for me to do.  It brings me so much joy to know that even I can be helpful to others.  I don’t need to be useless and just keeping myself occupied. 

 Some of the ways God has directed me is through encouraging others.  Sometimes it’s through my blog, or something that I write for my class, and other times it’s sending an email to a friend who is lonely or isolated.  Sometimes it’s going to visit someone who doesn’t have company, like my Grandpa when he was in the nursing home.  Other times it’s creating a card with a photo of something or someone to surprise them and remind them of something positive in their life.  Sometimes I am inspired to call with my Mom’s help and we put the person on speaker phone so I can hear, and then I am able to type my message and my Mom speaks it out loud.  Yesterday, one of my new friends at camp and I chatted on Facebook for a while.  It was great for both of us, because she uses a keyboard as well, so we were able to communicate that way.  If I give someone one of my paintings it is something I am inspired to do if they would be blessed by having it.  

 If I live with this in mind, my days are meaningful and I have things to do that matter to me, and I hope to others.

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