Archive for Understanding Rett Syndrome

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 CD!!

October 26, 2009 · Filed under Disability Awareness, Music & Art, Understanding Rett Syndrome

I sat for many hours watching and listening to Leah play when we were young

I sat for many hours watching and listening to Leah play when we were young

I am so happy to let you know that I have an appointment this week with a studio about getting my music on a CD. We heard that there is funding available to help me get my music recorded in our town.  So I am very happy that it is about to happen.  We are meeting with the owner of the studio to find out the details.  I have asked my sister Leah, to play her viola for a couple of my songs, so she is getting her part ready.  It is so fun that I can now share music with her.  She is a great musician and has played viola for most of her life.  She plays in an orchestra and a band, so she is very good. But to have her create music with me is something we haven’t done before.  She is always encouraging of my music so this will be fun for us. 

My uncle is getting married in December and he and Kristin asked if they could use my music for their ceremony.  Leah will be playing for that too.  What is fun for me is that now I don’t just have to listen to others play their music, but the songs that are in my heart can be played by others and I can enjoy them too.  I can’t play my songs because my hands won’t work that way, but others can perform the music I have composed.  It brings me great joy.

 Love, Karly

I always wanted to play. This is at my grandma's house.

I always wanted to play. This is at my grandma's house.

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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 Visit with Ingrid

October 13, 2009 · Filed under Disability Awareness, Understanding Rett Syndrome · Tagged , ,

I will do my best Ingrid

I will do my best Ingrid

My friend Amy came to meet Ingrid too

My friend Amy came to meet Ingrid too

 I had a difficult start to my day yesterday.  I had a seizure at 7 in the morning.  I haven’t had one for many weeks so it was a bummer.  I wanted to feel great on the day Ingrid Harding came to visit me at my house.  She was so kind and respectful to me.  She was like a close friend.  She understands Rett Syndrome so well, so it was freeing for me to be with her.

If I could understand all the things she is hopeful about I would try and explain it, but it is something that I can’t describe so I will ask you to go to her web site to get more information about Rett Syndrome research.  She is a mother who has a huge heart and wants the Drs and the researchers to find a cure for Rett Syndrome.  She is very hopeful that it can happen real soon.  What she needs is more people to understand what it’s like to have Rett Syndrome and how it affects families.  Her daughter is 8 years old that has Rett.  Her name is Sarah.  She has a lot of breathing challenges like I do.  Ingrid has dedicated her life to helping everyone get involved in raising money so the cure can happen soon.  She said it could happen within 10 years with enough money to help them. I asked her how I could help and she said to keep telling my story.  I have some information that is helping Drs in Australia, so I continue to work on their research project too.  I love being able to help them.  It helps me feel better about the struggles in my life related to my disorder because I can share them. 

 My Mom read one of the brochures to me that Ingrid left for us. The front of it says: IMAGINE The Symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorders…all in one little girl. I think since I don’t know what it’s like to have Parkinson’s I couldn’t have described it this way, but if it helps others understand what Rett girls face everyday, I am glad someone put these things together.  Please check out Ingrid’s information.  She is a wonderful Mom who’s trying to make the world a better place for so many who struggle.  She said the researchers feel they are close to reversing the damage, not only of Rett but of other disorders that are similar.  See what you think after reading their information.

 I asked my Mom to get this down for you: Girl Power 2 Cure is the organization that Ingrid Started to help raise awareness and funds for research. Here’s the link:

www.girlpower2cure.org

 Love, Karly

I decided to put my magnet from Ingrid on my van

I decided to put my magnet from Ingrid on my van

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I’m Hiccuping and I Cannot Stop

September 29, 2009 · Filed under Rett Syndrome, Understanding Rett Syndrome · Tagged

I am feeling better today, but yesterday I had the hiccups five times.  I’ve had them throughout my life, but when I get them they really hurt because I have them for up to an hour each time.  My stomach gets really sore when I have them, so it’s frustrating.  The thing that helps me is drinking, but I usually don’t feel like it because it makes my stomach hurt worse when I have so much liquid in it. 

My Mom says when she was pregnant with me, I had hiccups for long periods of time, even then.  I don’t know if other Rett girls have this, but I thought it would be interesting to find out.  Let me know if this happens to your girl too.

Love,  Karly

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How Acupuncture Helps Me

September 24, 2009 · Filed under Rett Syndrome, Understanding Rett Syndrome, Writing Memoirs · Tagged , , ,

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Me feeling great today

I just returned from my acupuncture appointment. I feel so calm. I’m not hyperventilating and I am not holding my breath. I love how I feel. If I felt this good all the time, I would be so happy.

I have been going to acupuncture appointments weekly for almost a year. It has helped my mind the most. I feel so relaxed most of the time, when I have the needles in me. It helps my thoughts relax. They are often very active and I have a hard time focusing, but after acupuncture, I really slow down. For me, that gives me the chance to feel so content. It feels like I’m in a different body, one that is not struggling with so many movements and breathing issues. I love going to get acupuncture every week. It has changed how I feel.

People ask me how I sit still because I usually am so active, that I rarely sit quietly. I’m always moving. There are times in my acupuncture appointment that I am restless, but usually I am very calm. Sometimes I sit up then lay back down, but I rarely have any breathing issues while I have my needles in. But today I didn’t even sit up for 40 minutes. I didn’t even want to sit up after they got the needles out. Most of the time, I have about 25 needles in. Sometimes they fall out from my movement, but overall I feel so much better afterwards. I am glad we discovered it for me.

When I first started with acupuncture, I was really hurting. My body had so many hot spots, and then freezing cold areas at the same time. I was restless. My stomach was hurting. I couldn’t sleep well. I feel warm most of the time now. Last year my feet could be so cold they were blue. Or one of them would be really cold and the other hot. One of my ears could be freezing and the other one bright red from heat. It was miserable, but that is gone.

I thought this might be helpful to others who are looking for ideas for ways to help their Rett daughters.

Love, Karly

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Beau was feeling relaxed today too :)

Special Olympics beau

Beau loves to wear hats

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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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My Trip to the North Shore

September 14, 2009 · Filed under Caregiver, Disability Awareness, Rett Syndrome, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

Gregg, Mom, Karen and I next to Gooseberry Falls

Gregg, Mom, Karen and I next to Gooseberry Falls

My Mom, Gregg, friend Karen and I just returned from ourvacation on the North Shore of Minnesota. We had a wonderful time there.  I had never been to Duluth so I was amazed.  We stayed in a house that was beautiful.  I slept great there and was so calm.  I didn’t have nearly so much breatholding and hyperventilating as I do here.  It seems that being by a lake helps my body to be calm.  I loved it. I want to feel that way everyday!

 We went to a place called Gooseberry Falls.  It was amazing.  I could not see the waterfalls, but I could hear them, and I have seen the photos that we took. They are so beautiful.  There were trails that I could get pushed on with my wheelchair, so that is what we did.  I could hear the waterfalls. It was so perfect.  I think that was my favorite place.

 I also went on a boat tour of the harbor.  It was so interesting listening to the boat captain explain about everything that we could see.  It was so sunny and relaxing.  I learned a lot about ships and the Lake Superior that we were on.  It is a fresh water lake, but it is the deepest of all the great lakes.  It was cold in the water, but I was able to walk on the sand with Gregg’s help. It felt so good.  I wanted to sit down and play with the sand, like I have always done my entire life.  If I can touch the sand I sift it in my fingers.  It is fun to feel it, but I can’t stop my hands sometimes from putting it in my mouth.  That is frustrating because it calms me to play with sand, but it is gross in my mouth.

My feet walking in the soft sand along Lake Superior

My feet walking in the soft sand along Lake Superior

Gregg helped me walk on the shore

Gregg helped me walk on the shore

 

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

The boat was wheelchair accessible. It was very relaxing

The boat was wheelchair accessible. It was very relaxing

It was a trip that was much shorter because it was not so far to drive.  I loved it there.  I hope we can go again next year.  It is not impossible to go on a trip when you have a lot of needs, but it takes a lot of work for my parents and friend Karen who came with.  They worked hard to help me experience something new.  I am so glad for their love and support that gives my life adventure and experiences that I could never have on my own. It is always harder to be away from home, because things are set up so well at home, but when we are away I experience so many amazing things.  I love to be able to travel.

 Love, Karly

 

My Mom and I on the tour boat

My Mom and I on the tour boat

Gooseberry Falls, my favorite part of our trip

Gooseberry Falls, my favorite part of our trip

I felt so calm

I felt so calm

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