Archive for PCA’s

A Letter to Myself

I have been taking time to relax this week because I have been sick. I feel better and I am eager to share something today.  In times when I am quiet, I think of things to write about.  Today I feel up for writing.  

11 years old

I have many memories of days when I couldn’t write, before I could communicate,  before I could answer yes and no questions, not knowing if I would ever be able to do that.  Today I am writing a message to myself, a message I would have wanted to hear when I was young and had no words to share with others.  No hope that it would ever be different.  Today I can write this letter.  This is what I needed to hear.

Me at 9 years with Roxanne, one of my favorite people

My Dear Little Karly,

You see and can’t respond. You hear and cannot speak. You dream and cannot make those dreams come true.  Your hope is long gone that these things will be yours.  It is your life that is different than everyone around you.   You do not get the same treatment in school that other students get.   You hear people speaking to you like you are an infant.  You cannot respond with something suitable to that kind of disrespect.  There seems to be so little that is right for you.  It seems so hopeless right now.  Your life seems to hard to bear.  It’s not the life you would have loved to live.  There has been little to ease your worried mind.  

It will not always be this way.   You will have many things happen to you that you would not have chosen, but your life will be different than it is today.  Rett Syndrome will be discovered and there will be answers for what happened to you.  Do NOT fear your life. Do not fear what will happen.  You will be loved in ways you couldn’t have imagined.  You will be respected for what you can do, not pitied for what you are unable to do.  You will have a voice.  Your words will matter to many people.  

Remember these days long enough to write down your experiences, then let them go.  They are a heavy burden on your heart.  But other families need to know what you have lived through.  You will always have a place in this world.  Even if it looks hopeless now, your life will make a difference and you will have opportunities to contribute to this world.  

You will have joy.  You will find peace when you are outdoors.  You will discover a love of water and how much it will soothe you to spend time at the lake and watch the river boats on the St Croix.  You have always loved music and heard many songs played in your home, but what you don’t know now is that you will compose music.  You will have a voice through your music that others can hear with their ears.  You will not know how many people will be blessed by your songs.  But, most of all, you will be loved by God.  You will have a blessed life.  Not only for the things you can do, but because you are so loved by God and He will make your life worth living.  He will give you peace in the many difficult days you will have.  He will make the impossible happen.  He will bring hope to a life that seems impossible to enjoy.  Love will be the reason you are alive.  

It will be possible for you to have hope.  Don’t look at what you cannot do because that will discourage you.  Look at what you are capable of. Much will be discovered yet.  You do not need to be discouraged. For each difficult day you will have days that are incredible.  

If you focus on the spiritual side of your life you will be free.  If you focus on your body and your pain and your limitations, you will be in prison your whole life.  In the end you will know how many people have been changed by your story, so don’t be fearful to share the truth.  The truth will set you free and it will help bring understanding to a disorder that is so cruel.  

When your life is finished here on earth you will have such joy in knowing that you did everything you could to help others have hope for themselves.   

Find  joy in the little things. They are often the biggest things.  

You are loved deeply.  

~

Me on my 1 year birthday

I want to end my blog by saying, I didn’t realize how hard this would be to write, but I am glad I did it.  It’s important for me to remember, but not to focus on it too much.  I hope my experiences in my life can be helpful to other Rett families today.

Love, Karly

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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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My Voice paper

My friend Ashley and I on our way to camp last summer. That's a fun memory for me.

 

It is snowing in Minnesota again! Last week it was beautiful and we lost a lot of snow because it melted.  But today we are suppose to get about 15 inches again.  It is not what we wanted, but we are lucky that we have a warm house.

I wrote something last week for the Minnesota Women’s Press.  My music producer, Barbara McAfee told me that the theme of the newspaper for April is Women and Voice.  I had 450 words that I could write, so this is what I sent in.  I don’t know if it will be chosen, but it was fun to put my story into that many words.  I love to write. It helps my body calm down to get my thoughts out.  I remember how hard it was before I could communciate, so I really feel the struggle in my heart for those who can’t communicate.

In My Own Voice

I have lived for 25 years.  Only my mother has heard me speak.  I was nine months old and I said “meow” when we were reading a book together. It was the first and last word I ever spoke.  I tried really hard to speak, but it has not been possible for me because of Rett Syndrome.  After years of therapy and questions, we got that diagnosis. Many things changed.  It was a burden to be a young girl with Rett Syndrome because little was expected of me by everyone but my mom.  She knew I was in here.  She believed when others talked about her behind her back.  I heard them.  My story is one of great joy and happiness because, in spite of all the things that have been taken away from me in my life, I have had many great gifts.

I began working with my music therapist when I was 14. She believed in me and gave me a voice by developing a way for me to compose.  I didn’t know if it would be possible for anyone to hear what I heard in my head.  But with much effort a song came out. It was heard by others for the first time.  I cannot use my hands to play piano. I cannot hum the song I hear in my head.  I cannot write it down, so each note is slowly and carefully chosen by me from cards that my teacher places in front of me.  Somedays it’s impossible for my hands to work. After many months of effort, my song comes to others’ ears.

It’s been many years since we finished my first song, but that song changed my life.  I was no longer just the young girl with the diagnosis of “profound mental retardation”.  Those who believed, heard my voice and saw me in a more loving way as someone who had lost so much because of a disorder she never chose.  I have finished nine songs. The best day of my life was when I sat with my family and producer in the recording studio, surrounded by people who felt my voice needed to be shared.  I heard my songs performed by a wonderful, professional pianist.  They brought my music into the world on a beautiful CD, that I titled, “In My Own Voice.” My sister’s viola added depth.  I hear more music yet to be composed and I feel content.

I hope when you meet someone who is unable to speak that you assume they are intelligent.  It may change their life to have just one person believe.

Karly Wahlin

 

I’m eager for Leah to come for a visit. This is her and Ludo at a lake near our house last summer.



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A Place in This World

At four I sat on my Mom's lap everyday while she played piano for me.

 

I have been thinking a lot about my life and what I hope will happen in this world while I am still alive.  I haven’t had as many events and activities as I did last year because of my CD.  It was overwhelming sometimes to have that much attention, but I felt so happy to have a voice that others valued hearing.  Since the Fall I have not been as busy.  I love hearing from others and how they are affected by my songs.  This is the day that my music therapist is coming and I am working on a new song.  I feel very happy about that.  This new song has been waiting for a long time to get out of me.  I am calm today so I hope it will go faster than it does when I am hyper.

My keyboard is the best way I have to communicate. I hope someday it's easier for me.

 

My Mom and I have been reading a book together this morning.  It is called, Disability is Natural.  I like what she is saying because it has been true in my life.  She said that if our world revolves around therapies, and services for people with disabilities that we get stuck in our lives and don’t have many freedoms that an ordinary person would have.  I know that if anyone could see what really happens in some of the day programs in this country they would be very upset.  People are not given lives that matter when they are grouped together with few opportunities to have a normal life.  It’s ridiculous to think that going out in a bus with others twice a month if they are lucky to some store or park makes us part of our community.

For people like me, who cannot make our hands operate things, we are given even fewer opportunities.  I have an intelligent mind but the programs near us underestimate most adults with disabilities who have needs they can’t take care of themselves.  It’s not appreciated that a person can have an intelligent mind and limited physical skills.  We are grouped together with elderly adults who are mentally impaired and have Alzheimer’s.  We are given the same meaningless objects to fiddle with.  Since I am intelligent  we are  going to have to find a way without a day program, to have a life without isolation.  We are exploring everything we can but it’s hard to find people who are open to having someone who doesn’t sit quietly in book discussions.  My writing group ended because my teacher felt not enough people were coming.  I loved going there.  I loved feeling like I could share my thoughts and be heard.  I have a women’s study group that I have been going to but since I haven’t felt well for a while I have missed many days.  I decided to write about this because I know there are many young girls with Rett Syndrome.  I hope you believe they are intelligent.  I was so happy to hear of the comments last week on The View when Anna’s family shared that she is intelligent and understands.  That it’s just her body is not working right, because that is new.  When I was in school and especially when I was young, people assumed girls’ with Rett Syndrome were severely mentally impaired.  Little is offered to girls with that diagnosis.  It seems like that is changing and I am so happy about that because there are so many great things to do if we are seen as intelligent.  For those who have young girls with Rett Syndrome, I hope your schools are believing in her and when she graduates that her life doesn’t end and that she is allowed to show in every way that she is intelligent and capable of doing more than sitting in a room with others who are very impacted by their own disability.

My friend Elizabeth has Rett Syndrome and does not go to a day program either. She is very intelligent and communicates with a keyboard too.

 

My dreams for my life are to live with my family with the right kind of help so I am free to communicate, create art, write, have friends, have great things to look forward to, have people around me who believe in me and help me on the days when I can’t stand to be living in my body.

I have many hopes that one day there will be relief for the many girls and some boys who live with this rare disorder, but in the meantime, we need your kindness and we need your belief that we deserve more than just sitting and waiting in buildings until we die.  My Mom said, after we decided that I would not stay in the adult day program I was in after I graduated from High School, that it was like going to kindergarten and never being able to graduate for your whole life.  I would say, it’s like going to pre-school before you can crawl and talk and never be able to graduate.  It’s painful for those of us who are capable of more.

I have never been able to play music that sounded right to my ears, but I have songs in my heart waiting to come out. Leah has always played beautiful music.

 

Until there's relief for girl's with Rett Syndrome we will live in difficult bodies. My friend Ingrid Harding gave me this magnet for my van. It's from Girlpower2cure. There is hope for us.

 

I believe there are fewer people with low intelligence than many believe.  I think there are many people without the freedom to communicate because no one offered them the dedication it takes to make it possible to share who they are.  If it weren’t for my Mom, some of my teachers and caregivers, I would be just like them and I would hope to die very young.

I shared this because I hope this world continues to change for the better.  We are all better if everyone is valued.  I am sending my Rett friends a big hug today.

Love, Karly

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Having Time Alone

My Mom and I planted this pot for Mother's Day

I have not felt great lately.  I am discouraged that life is so hard.  I have been so hyper.  It makes me hold my breath and hyperventilate all day long.  It’s not fun to feel out of control.  I know that my other Rett friends struggle with anxiety too, but I don’t see them acting the way I do.  I haven’t been able to breathe normal most of this week.  I was so discouraged yesterday because I was feeling how hard my life was.  I don’t feel like I have much interest in living in a body that causes me so much struggle.

I’ve had a few days in my life where I didn’t hold my breath and hyperventilate until I was exhausted.  It has become really sad for me.  I thought a long time about whether I should write about this on my blog.  But since I am honest about Rett Syndrome and how it has affected me I decided to be honest about this too.  I have had great health and I have had opportunities that other females with Rett don’t have, but I have not had an easy life.  I struggle daily to find peace and calm.  I struggle a LOT with anxiety.  I struggle with breathing normally.  My stomach often hurts.  I’m living in a body that gives me so little rest.  I get discouraged when I see how exhausted my parents get, trying to meet my needs.  I like comfort as much as anyone does.  It’s so difficult to love people so much and know that my needs wear them out.  I never forget how hard it is for others to care for me.  I haven’t wanted to have so many people in my life who are here and trying to figure out how to best meet my needs.

I haven’t had a day in my life that is just for me.  That I do whatever I want.  That I just stay in bed if I want.  I can’t go anywhere by myself.  Even going to the bathroom, where most people have privacy, I have none.  I don’t see how I can ever be alone in this life.  It’s so stressful for me to always have someone in my site.  I decided yesterday that everyday I want to have time alone in my room.  I asked my Mom to help with this so I could listen to music or book on cd by myself.  I’m glad for this because I have some peace in my room.

When my days seem to hard to live I just pray and ask God to see how I can help others.  If I just have to struggle and I can’t use it to give others insight into Rett Syndrome it’s not worth the pain.  I hope you understand that there are many days that those of us who live with Rett Syndrome live, wanting something more from this life than separation and pain.  It’s not easy to be this discouraged, but I wanted to let you know.

Love, Karly

I love this garden fairy. She is in the living room now by our plants.

 

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Heaven on Earth

I have had a wonderful day remembering this past week.  I wish that the days we have at camp were here more than once each year.  I have so much contentment there.

Normal is overrated

It’s something that many people never think about; what it would be like if you were not noticed for having something of great value to share with others.  If your contributions to this world were seen as minimal.  If you were noticed for having a bandana that you can’t stop chewing.  If you needed help to eat your food at times, and when you did it was all over your chin.  When I am with my family and when I am at camp, these things are so far away.  They still happen but they are not the only thing people see.

Ashley is so kind to me

Deb is such a great friend.

Emily is not excited about having her picture taken. This is her foot!

This year I feel so fortunate for all the amazing things that God has given me to do.  I feel so blessed, but I can say that being around others at camp who love and serve those of us with high needs has made my heart so glad.  I want to have more of that than one week each year.  I want everyone to see people with disabilities as valuable humans on this earth.  That we have compassionate, understanding hearts, that we are spiritual in ways that the typical people aren’t.  That we have gifts to offer just like all people do.  I think this world would be more loving if there were more people like the ones I spend time with at camp.

Mitzie and Audrey on the hayride

On the last day of camp we were sharing where we learned, what we learned and how we see how we can contribute.  My friend Mitzie said that the best friends are the ones with disabilities.  They are the most real and grateful. I long for heaven on earth.  I hope I can share that with others.

Our last session together

Love, Karly

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