Archive for Music & Art

A New Poem

I love writing poetry. I have been thinking about this poem for some time.  I hope it helps you like it has me.

This photo was taken last summer.

Healing

Time gives our thoughts a place in our hearts

Places that need healing from broken moments

To look for understanding,

for kind responses

It doesn’t always happen.

 

 

We look for peace and then realize

it comes from allowing other broken hearts

a different way to heal

We see there is more than one way to

look at the same moment in time.

 

 

We let our deepest thoughts be known by God

and love those in front of us

who may not feel the same way.

 

 

karly wahlin

May 7th, 2012

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A Very Peaceful Christmas

It's a beautiful time here in Minnesota

It’s a very peaceful Christmas for our family.  I feel very eager to share this with others.  I have not been writing on my blog because I have spent my time preparing for my chapel talk next week.  I have been given 45 minutes to share whatever I am ready to share.  I am going to share two of my songs and a couple poems, but mostly I want to leave them with hope.  

I feel so much joy because my life has a purpose.  I know that everyone has a purpose but many never find theirs.  Part of my message is to be honest about my struggles.  People often see only the good parts of our lives and not the real challenges.  However for me, I can’t hide the real parts.  They are visible to everyone.  If it’s possible for me to feel a purpose, it’s possible for everyone.  I don’t have an easy life, but I have a great life.  

I never will know why people who have so few challenges live only for themselves.  I have so much joy in helping others.  I wish you peace and hope today.

Leah was home last week. She was sick while she was home, but we had a great time together. There was lots of piano music.

Love, Karly

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The Sun Will Come Out Again

I love being at the lake with my Mom

This is in our front yard.

I felt like it was impossible for me to feel great again, last week.  I was so unhappy that I thought it would be this way now.  No matter what I said to myself I couldn’t feel hopeful inside.  I was very afraid and it caused all kinds of trouble in my body with Rett Syndrome.  I prayed, I talked with my Mom and Amy, I walked, I watched relaxing videos, I listened to soothing music, I went outside as much as possible, we went for long, relaxing drives, I listened to books on CD, I listened to sermons from church and nothing stopped how my brain was thinking.  I felt so crazy!

I decided to share this today because I’m almost done now with the seizure medication that caused all of this to happen to me, and I feel great today!  I never want to feel like that again.  I would rather have a seizure than feel crazy.  I don’t know if other people feel that way on their medication, but if any of my Rett friends do, I feel so sorry for them.  I have never felt well on the medications that are suppose to stop seizures, but this was the worst.  I think if I had to do it again, I would say No.  My Mom had me decide if I wanted to try the medication and didn’t start it until I said, yes, it was time.  I feel glad for that, but I feel really glad to be done.  We are seeing my Dr next week to see if she has any other ideas.  She wanted me to start anti-anxiety medication to stop how crazy I felt, but that made it worse.  

I’m eager to say something: In my life I have had many hard days with Rett Syndrome.  I have had days when I couldn’t stand to be in my body anymore, and I get discouraged.  I pray a lot for those days so I don’t feel so alone in my struggle.  I haven’t always felt joy in my life.  There have been many days that I can’t imagine a harder life than the one I have lived for 26 years. But then days like today come and I see how beautiful life is and I see that I have not been alone, that God has given me a great gift.  How He has used the hardest times in my life to give me understanding, courage and gratitude.  I know that God doesn’t like Rett Syndrome.  And I believe with all my heart that He didn’t create it.  That it’s something that happens to humans for some reason we don’t yet understand.  I believe that God has given me the ability to communicate my experiences for a reason, and today I am sharing some of those.  Only God can make sense of Rett Syndrome.  I’ve been surrounded by great, loving people.  My Mom and I have been through some very painful days together.  They have been hard on her.  But today, our lives are better and our spirits are happy.  We have many friends to thank for that.  People who have entered our lives recently and people who have been here with us through much over the years.  

I wanted to share one of my favorite songs that I composed when I was 16.  This is one from my CD, In My Own Voice.  It’s title is:  For Real Friends.

I hope you enjoy it.

One of my favorite friends who has Rett Syndrome. I have so much joy when I am with her.

It is always a lovely day when we are together. Both of these sisters has Rett Syndrome.

Love, Karly

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Dog Days Poetry Reading

Our friend Sandy took some great pictures. This is ArtReach St Croix where our Mulberry Poets meet each week.

I have had trouble with Rett Syndrome lately.  I have felt so hyper and so much anxiety for about 10 days then I had some seizures this weekend.  I think it was becasue I have not been able to swallow easily for over 2 weeks.  We have found if I drink 120 ounces everyday that i usually don’t have seizures.  I still can’t swallow easy so it’s been hard.  

My step-grandpa is in the hospital very ill and my grandma ended up going into a nursing home near us to get stronger.  She wants to go back home.  So there have been many struggles in our lives. I haven’t felt like writing much.

But something wonderful happened last night!  I went to bed but my Mom went to the Dog Days Poetry Reading.  It included my Mulberry Poet friends and there were about 35 people who came.  I submitted 3 poems.  My Mom read my introduction of myself and 2 of my poems and John read the third one.  I love how his voice sounds when he reads.  It was a hot summer night and some of our friends came too.  I am honored by that and I hope that a few more people learned about Rett Syndrome and most of all that a few more people had their hearts opened to those of us who live without a voice that they can hear. 

My Mom read my words and was my voice

My Mom said there were many talented writers

Corrine is in my group. I love her humor!

Here’s is what was shared with them last night. 

1. My introduction

Dog Days Poetry Reading

August 23rd, 2011

I am not here tonight because I am home in bed. 🙂

I have asked my mom to share this message with you, and she and John will read the three poems I have submitted for tonights reading.  I live with Rett Syndrome a rare disorder that primarily affects females and causes us many challenges in our bodies.  I am not able to walk independently or care for my own needs.  I have spoken one word in my life. I have many challenges that made others believe for most of my school years that I was profoundly mentally impaired.  I was introduced to a keyboard by a woman who believed in people like me who were non-verbal when I was ten years old.  That was the first time that I could share my needs and thoughts.  I had taught myself to read by following the letters closely as my parents read to me and my sister everyday while I sat on their lap.  By the time I was given a keyboard I knew how to spell words.

Throughout my childhood I was surrounded by books and music and I found my voice through my music and my typed messages.  I have composed music for sixteen years and I have many things yet to write.  I have found a love of poetry and though I am just beginning to learn how to write that well, I love being able to share my thoughts in a few words well chosen.  I hope when you meet someone who is non-verbal you assume they have intelligence because the experts might be wrong about them.

My first poem:

I wrote this poem on the last day of a very wonderful trip with my parents and a caregiver in an RV.  It was the first long road trip I had ever taken.  I remember many things about that trip but the most precious to me, is that we did it!

It was a trip that holds a lot of memories.  My wish is to have more trips, but for now, I hold these memories close to my heart. 

 My Impossible Yes!

I sit in the shadows of the Black-hills and all their beauty

I am in awe!

For me to travel has been a great feat

I am not alone here 

You see, I depend on the legs and backs of many people to enjoy this magnificent place

If I were able, I would drive through the hills, and feed the curious burros that came to greet me 

I would take pictures of buffalo as they wandered the hills in herds

I would run up and down the hills, shouting with joy!

I would sit quietly watching the wild horses who live in as much freedom as they are able, 

Their family bonds offering safety and comfort

I carry these memories in my heart

Thanks to my family I have done the impossible!

YES!

My second poem:

This poem came to me because of all the ways we are judged and judge others.  Our inability to really see into people’s minds and hearts, keep many of us living lives apart from others. 

 Thoughts In My Head

 Talk is cheap they say

It comes so easily off the tongue

It rolls around mouths and exits into people’s ears

forming thoughts in the listening heart

Talk is cheap for those who never think twice 

about making sounds that form words

Words that form other people’s opinions

But for those of us who have no words others can hear

their thoughts are formed by our appearance

by the lack of words,

never seeing beyond the visible 

to hear the hearts who live in silence,

who live in bodies that betray their intellect

I say talk is cheap but thoughts are expensive 

Thoughts formed without questions hurt many

John read my poem A Resting Place. He has published a book of poems

My third poem read by John:

This poem came to me while we were in a beautiful cabin during a rainy day on the North Shore.  I felt so peaceful there and I want to have that feeling stay in my mind.  This is not easy to do somedays, but I find a place inside me that holds the memories of that day, and I feel peace all over again.

A Resting Place

People get busy

They overlook, overwork, get weary

keep going…and going

They ignore signs of hope

the call to rest

leaving behind and getting away seems impossible

like there’s obligations bigger than they

It’s a call often ignored

but the North Shore restores mind and soul

It gives a break from life as we know it, 

providing comfort in its solitude.

Thank you Lake Superior for helping us slow down

to see

hear

look 

explore what is lovely inside each of us 

Together we love

apart we long for peace and harmony

Love, Karly


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My Story

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

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

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

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

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

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

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

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

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

Love, Karly

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

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

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I Love Our Piano

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

4 years old

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

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

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

For Real Friends

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

Love, Karly

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Easter Blessing

Easter Blessing

The hope in every heart is peace
giving freedom to dreams

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

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

rather,
look
hear
embrace
love
extend hope

We are not alone
We are part of the divine.

Karly

April 22, 2011

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


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