Archive for Disability Awareness

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

IMG_2131

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

IMG_2096

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

IMG_1637

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

 

 

 

Comments (1) »

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.

Comments (3) »

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.

IMG_2716

(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

Leave a comment »

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

 

 

Comments (2) »

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

Leave a comment »

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

Comments (5) »

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

 

Comments (3) »

Hope and Much Joy

September 5, 2009 · Filed under Disability Awareness, Music & Art

This has been an incredible week.  I have wanted to have a group of friends who are interested in doing meaningful things together, for many years.  Since I am not in a day program, and our town has very little to offer adults with disabilities, it has been lonely for me.  It is not good to be without friends to do things with.  I have so many things I want to do with others and now it is finally happening.

There is a beautiful place in our town for people who are retired.  It has everything from a pool to beautiful flower gardens, and walking paths to restaurants, and Dr’s offices, a theater, a library and very nice people in it.  They’re always so sweet to me.  My group of friends and I are going to meet there every week and do service projects and have artists come and join us.  We are eager to help others. We are so excited that they are eager for us to come there.  It is so fun for us to have a beautiful, kind place to go.  Many times adults with disabilties are given the back rooms with little interesting things to do. We are suppose to be content with projects that others give us.  We are not consulted about what our dreams are for our lives, but to be given the freedom to choose an activity that matters brings hope and lots of joy.

I am content.

I am smiling :)

Love, Karly

Comments (2) »

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

Comments (2) »

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

Comments (3) »

« Previous entries
Next Page »