Archive for July, 2011

A Miracle Happened!

This week I had something really wonderful happen to me and I want to share it with you. My friend Elizabeth who also has Rett Syndrome and communicates by typing too, came for another visit.  We love being together!  It’s so rare for me to be with another Rett girl who can communicate, so when we are together we have so much fun.  I feel free with her.  

We were so close to the water, which we both love!

We went to a lake near our house.  Our mom’s went to pick blueberries so they were not with us, but a new person we just met to be a caregiver for me, went with us too.  What she saw has never happened before with Elizabeth and me.  We decided to switch facilitators so Elizabeth’s caregiver facilitated with me and I was able to type.  That was the first time we did it together and that is a miracle, because many times when people see me type with Mom or Amy, they assume they could never do it, and stop trying.  But when Kristen took my hand and helped me stop my movements I was able to type words for her.  It was slower than Amy or my Mom and that is a miracle!!

Then, Amy facilitated with Elizabeth and she typed for her too, immediately!  I wanted to share this because both Elizabeth and I have struggled so much to type out our thoughts in our lifetimes and few people try to type with us, which makes us sad.  It makes our Mom’s the only person everyday that we can type with, so whenever anyone wants us to respond, they run get our Mom’s and it has made them exhausted and us frustrated because we can type with more people who are interested in learning.

When I was thinking about this today and think of all the people who have been in my life and have missed what I wanted to say because of their inability to help me communicate, I felt sad.  But then I remembered Tuesday, and I remembered how happy Elizabeth and I were to be free to type for the first attempt at it with another person. I felt so much joy, because I know it is possible still for new people to help me communicate.  I feel really hopeful that my new caregiver who was really interested in what happened will be able to type with me too.  

I stop and chew on my bandana while I am typing. I am visiting with my friend Barbara who produced my CD.

My friend Ashley and I could type slowly together. She just moved to Chicago and I miss her so much.

It was a miracle because Elizabeth holds her hand very different than I do.  She has very strong fingers and holds them really straight and types very well right on the key with her left hand.  I type with my right and curve my finger and use the side of it to touch the key.  I fly over the keys really fast so my facilitator looks over my right shoulder to see the letters.  We both move our heads while we are typing, because both of us can see better if we don’t stare straight at the keyboard, so we move a lot.  Rett Syndrome doesn’t let us sit still very often.  Elizabeth is always moving her body and I am always moving my hands.  I stop to chew and fiddle by drumming with my left hand while I’m typing.  I move my upper body forward and back all day long.  I thought this is important because I have had so many therapists think if we aren’t looking straight at something that we are not paying attention.  It’s not true, don’t believe that!  We get everything.  We see everything.  

Elizabeth and Kristen are coming again next week and we are going out on this boat again. We love being together near water.

I was sharing my excitment with Amy just before we went on stage and my Mom read the message I had for the audience. (The Arc MN 2010 Annual Meeting) There were about 350 people there.

I wanted to share our miracle and how fortunate we feel that this happened for us.  Everyone was smiling!!  Everyone felt hopeful.  We were so thrilled!!  My Mom says she wished she was there with the camera, but the blueberries are great!

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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Horses Bring Me Joy

Beau

I love horses!  I have since I was able to meet my first one when I was very little.  I feel their energy.  My Mom and I go to horse shows and I sit real close to the fence so I can see the horses and see how they are doing.  Sometimes horses have even stopped to connect with me.  I always love that, but their riders get concerned.  

Beau and I in his barn

Horses have brought me a lot of joy.  We have great friends who have been so kind to us.  They have a therapeutic riding farm and invite me to come and ride at their farm as a friend.  When I was younger I was in a program and signed up to go every week but as I got older and my energy and health were not consistent, it was harder for me to go every week.  So Bill and Laurie, have been so thoughtful and invite me to come when I am able.  I feel so fortunate and I love their farm.  It feels like heaven to me!  I ride Chester who is a Fox Trotter and a very strong horse.  They also help us by bringing Beau hay throughout the year since we got him six years ago.  Many people have blessed us by offering to help care for him.  I feel so glad that he is near me and we get to see each other outside when it is nice and inside when it’s not.  

Amy and her sister Heidi were my sidewalkers

Laurie is a great friend to us.

My favorite place on earth!

Some great friends of mine.

My heart is content when I am with horses and I feel much peace.  I got to ride this week. I still feel the joy from that. I hope you enjoy these pictures as much as I enjoyed my time. 

Beau is very peaceful and calm on days I am not feeling good.

Beau likes unusual things to do like sitting on his exercise balls

Beau likes to sit on the couch. He's practicing it here.

Beau with Gregg in our living room

June 2011

Love, Karly

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Happy Heart

Our friend Amy and I had so much fun with Kristin and Elizabeth.

Elizabeth can type with Kristin so we can visit easily.

This past week my friend Elizabeth came to visit me and we did something really fun together.  I love to see her and we always enjoy talking together.  She is going to be 30 this summer and she also has Rett Syndrome.  She types with a keyboard too.  It’s like having a friend who knows everything about you.  That’s what we feel about each other.  There is a group of people who give boat rides and fishing opportunities to the elderly and people with disabilities and they have a pontoon in the river near our home.  Elizabeth fished too.  We finished with a picnic.  It makes me so happy to be around another woman with Rett Syndrome who is able to communicate with me.  Sometimes we can do it easily and other times we really struggle to type, but this week we just had fun together.

Our captain was so fun. He joked a lot.

Elizabeth loved to fish!I wanted to share this because I know many of us with Rett Syndrome suffer and struggle.  It’s not a life we would have chosen.  But to know that there are others who understand us brings peace to my heart.  We went to church last night and I felt like there was something very important that happened.  Our pastor was sharing a very sad memory from his childhood and how that memory and those experiences still affect him today.  It was sad. It was real.  He was talking about what he does with God to help heal some very painful experiences in his life.  It made me see how God has helped me accept a life that no one would choose. It’s a life full of challenges that most would not imagine; with dependence on others who rarely stay in your life as a friend,  who can leave because it’s best for them.  Who have goals and dreams that you don’t fit into.  A life filled with physical pain and suffering at times.  A life that requires so much patience.  A life that is lonely.  

But I sit here with a smile on my face and great joy in my heart because my eyes can see how much better off I am than I would be if I never had this disability.  I don’t feel like I have an impossible life. I have seen things that many others can’t.  I have experienced joy that is not from this world.  I see God working in people in ways they can’t understand.  I don’t worry about Rett Syndrome.  It hasn’t stopped me from being loved by God.  God has given me so much peace to endure this life.  I know that even if I have no abilities in my lifetime that others have, that my life mattered while I was here. Because God showed me that even if I struggle, He can use my life and my story to open people’s minds and their hearts to girls with Rett Syndrome.  We are not the limited people we appear to be.  Our hearts are held by God and that is the part of us that really matters.  

So even if everything else seems to be wrong with our physical bodies, I am confident of all the girls I have met with Rett Syndrome, that our hearts are open to God.  I have so much joy because my hope isn’t in a cure.  My hope is not in a life that is easy. My hope is in my heart. It is from God. So to me, Rett Syndrome is God’s gift because He made it become a blessing.  I believe that with all my heart today.  I feel so glad for my Mom and Gregg who live with me everyday and go through many hard things with me. They believe in me always. 

A memory I love from camp two years ago. We talked of spiritual things and loved every minute together.

I send you great joy and hope.

Love, Karly

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My Beau

I’m eager to show you something.  Yesterday when I wasn’t feeling good because I had a seizure during the night I asked my Mom to go to the paddock with Beau.  It was so good for me because I feel so much better when I am with him.  He can sense when I am in pain and when we got into the paddock he smelled me all over and then stood very close and wrapped his neck around my legs.  I felt so loved by him.  He is able to connect with me.  His comfort makes me feel better.  I like having him in our back yard so we can be together whenever we can.  He is seven now, and is so relaxed.

This is when we first got in the paddock

He smelled me all over because he can sense when I'm in pain.

He wrapped his head around my legs and stayed that way for a long time.

It's fun to put visors on him. He likes to wear things.

Love, Karly

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Remembering My Days

I am sitting today on the deck with Mom and Gregg. It’s a day I’ve looked forward to for a long time.  It’s my 26th birthday! I asked to share this day with Mom and Gregg. I have had many parades in my life. On many of my birthdays, I was not feeling good. I have had a rough start today because I cannot stop chewing and hyperventilating so even typing is hard.  Both my Mom and I are weary.  

July 5th 1985 with my big sister Leah

I was too young to remember this one! I was one week old.

At one month I could hold my head up.

My 1st birthday

With my friend Roxanne Carrington when I was 9 years old.

I’m 11 years old. This is on our deck when it was new.
On my 12th birthday in a rowboat. I remember this day because I could communicate then and I wrote a story about a fish. It was a fun time.

It’s been a quiet week, so I’ve had many hours to think.  I know that I am very fortunate because even though I have Rett Syndrome, I am able to communicate and I have had many great things happen in my life.  I realize that even though my life has been challenging and at times I wished that I could die, I have given others a view they probably wouldn’t have without my story.  That gives me comfort today.  I know that without my ability to communicate, many families and girls with Rett Syndrome would not be seen as young girls who lost something they couldn’t help. 

I am eager to say that I feel like God has given me the gift of communication because my life is suppose to be more open to others.  If I didn’t have it and I didn’t have family who believe in me and give me opportunities to share my story and my vision and my life, I would be so sad today.  But inside even though I am struggling today, I feel much gratitude and I feel like it’s been a life worth living.   I understand how hard it is to live with Rett Syndrome.  My Mom and family do too.  I think my Mom would say today, it’s more than she wants to handle!  

Yesterday in my grandparents back yard. My back has been sore so I try to lay down everyday.

Today, we would just like to celebrate, so we are going to the lake.  I have asked for a picnic and a chance to be in the water.  No parade today.  Sometimes the noise is too loud for me and I don’t enjoy it, so today we are going to be by ourselves.  

At the beach I sit in my beach chair in the water. Gregg carried me to my chair.

Our lake has a beach wheelchair that goes in the water and over the sand. I love it because it allows me to get in the water easily.

The water calms me. I felt so much better when we got there.

I hope everyone has a great day today, and for those of you who are struggling and suffering from illnesses and disorders you never expected to have in your life, I send you a prayer for peace, because it’s not an easy life. But I know that when I get through this life I will understand some things that I cannot while I am still alive.  I know that I am loved by many today and that God loves me even more, so I feel content and my heart is glad for my days.  

I know that many of you have written to me and I haven’t felt up to responding yet, but I have many answers on my blogpage so I hope you continue to read what I have written over the past three years.  

Love,Karly

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