Archive for February, 2011

My Own Experience

February 28, 2011 · Filed under Disability Awareness, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged , ,

I was thinking this weekend of some of the times in my life, especially before I could communicate, and what people misunderstood about me.  I thought it might help if I wrote about it from my memories.

Me at 1 week old

 

For the first ten years of my life I had no way to share what I was feeling, thinking or needing.  It is hard for me to remember how painful it was to be misunderstood, but I feel good today so I feel ready to share some of my memories of that time in my life.  I know there are many girls with Rett Syndrome who are experiencing some of the things I did, so I hope if I can share my story that it might help someone.

I wasn’t able to tell anyone that I was hurting or that my tears were grief, or terrifying fear.  I haven’t had much hurt that I can’t share in the last 15 years, but before the keyboard I couldn’t say anything to respond to people’s comments about my intellect, my body, my vision, my ability to understand their words or that I could read. So I understand many of the girls’ pain and tears.  I remember the doctor telling my mom that babies don’t get headaches, while I was having terrible headaches.  I remember them telling my mom that I was having absence seizures when I was just staring into space because I couldn’t stand someone being so close to me.

9 months old. I cried a lot. Leah was very patient with me.

I doubt that most people think about what it’s like to need to urinate and you can’t tell someone you need to go to the bathroom.  I am not able to hold it long enough to get to the toilet, because I cannot walk there myself, so I wear diapers. It’s really embarrassing to urinate in a room full of people even when they can’t tell I am going.  I have to try and calm myself enough so I can do it in front of them.  Sometimes I stare off into space so I can create some privacy for myself.  That’s not a seizure.

If people assumed I was not intelligent, they said some really awful things right in front of me.  Many of my memories of going to doctors and therapy visits are painful to remember.  Sometimes they would talk about me in front of me, saying whatever they wanted to say to my parents and then turn to me and talk baby talk and speak LOUD. If someone thinks you are profoundly mentally impaired they don’t worry about what they say in front of you.  They don’t worry if your feelings are hurt.  They don’t worry that they might be completely wrong.

I was so uncomfortable in this seat that was created for me but I couldn't tell anyone. I cried in it.

 

It makes me feel so amazed today how much different I feel just knowing that more people believe in me and that I don’t need to try and prove everyday, in a body that refuses to function right, that I am in here and that I feel everything very strongly.  That I see them and my intellect is as good as theirs.  I can remember feeling terrified that the best day I could have is if I wasn’t in pain, for the rest of my life.  It was terrifying.  It was a life that wasn’t worth living.

I cried so much as a young girl for many reasons.  One of them was because of terrible  headaches. They are some of my earliest memories before I was one year old.  It hurt so bad because my doctor was telling my Mom that I couldn’t have headaches because I was a baby.  She didn’t know how to help me.  I would hold my hands up by my head and scream.  She started taking me to a chiropractor before I was one year old to see if they could help.  One of the things the medical doctors said was my head was small, but because we didn’t know about Rett yet, we didn’t know that was part of it. The Chiro worked on my head a lot and it helped relieve my pain.  They were very helpful to me.

Another reason I cried was fear.  I was so afraid.  I knew that something wasn’t right in my body because I tried so hard to pick things up, and feed myself or say words, and I couldn’t.  It got worse when I was old enough to see other kids younger than me who could do those things. I felt terrified inside because I couldn’t find a way out.

When I was 1 1/2 years old other kids could do what I wasn't able to.

 

The other one I can talk about is grief. That didn’t come real early for me but by the time I was three years old, I was pretty eager to do things that others were doing around me. But, I couldn’t.  I was so sad.  The only way to relieve my sad feelings was to cry.  Since I couldn’t talk about them and teachers and therapists thought I was so impaired they didn’t offer me hope, I saw a life of grief before me.  It is hard to handle those feelings at such a young age.  My Mom and family believed in me but didn’t know what I was capable of.  The messages they were given by the professionals were not hopeful.  My Mom faced much grief and pain herself.  She loved me so much and tried so hard to give me a loving home with a happy life.  It helped me so much to know that she believed.  I feel so much better now that I know there is so much more to life than what we see and experience here. But before I knew about spiritual things I didn’t care if I lived.

My mom rocked me everyday

 

It has been hard to remember these things today, so I am stopping now.  I hope your girls and others who are non-verbal are helped by my story today.

Love, Karly

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My Voice paper

February 20, 2011 · Filed under Caregiver, CD production, Composing for piano, Disability Awareness, Music & Art, PCA's, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs · Tagged ,

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

February 10, 2011 · Filed under Caregiver, Composing for piano, Disability Awareness, Music & Art, PCA's, piano compositions, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing · Tagged ,

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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Winter is Hard on Me

February 9, 2011 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged ,

I am sitting in our den in the sun this morning.  It is very cold again today so I am not going to my study group but I feel great in this sunny room.  I have something to share today that I feel is important for my Rett friends. Because it’s hard to explain, and since most of us are unable to communicate easily I thought it might help if I shared what I have been feeling.

I’m having some good days  but most of the days in the past month have been really hard.  I feel so sad because I have wanted to feel good.

Gregg is able to carry me downstairs so I could watch the Superbowl with our friends.

I am not able to eat their snacks because I have a different diet, but they smelled really good!

I have never been warm in the winter so I can rarely go outside. My whole life it’s been this way.  I was so little for so many years that I could be wrapped up and carried outside but I couldn’t stay warm and it was really scary when I got cold, because I couldn’t say anything.  One of the things I love about summer is being in the sun.  It makes me feel so much happier.  We have tried many things over my life to help.  I have a light that is really bright.  I sit in the sun.  I take a lot of vitamin D, but it still feels so sad in the winter.  The videos I have of water we took last summer is not the same as being there.

What I want to share is not just how hard winter is but how it affects my body.  I don’t know what happens first, but I end up feeling so sick if I am sad.  It becomes many other things than just being sad.  I have had more seizures, I react to scents, I get so hyper I can’t stand to be in my body,  I will either sleep for many hours and wake up exhausted or stay awake for days without sleeping.  My body aches because I haven’t had the energy to go walking at Boutwell’s for many days in a row.  Then I get so lonely because I love to be out.  I miss many of my appointments to have fun and I feel isolated.

I got so hyper this week from smelling a strong scent on a caregiver that I couldn’t stop hyperventilating and holding my breath for about two days. It is something that is hard to explain but it happened when I was very young and first started having seizures.  My Mom remembers that I would have seizures within seconds of smelling perfume, or laundry soap or paint or gasoline or many other things.  I was very weak at that time.  As I got older it was better and I could tolerate many things that used to make me sick, but it has come back and I feel very worried that it will affect my life again.  I have so many things I want to do and I don’t like telling people that their scents or smells that are normal to them, make me sick.  They get hurt, even if I am very nice when I type it out. I hate that because then I feel sad, but I feel better if my health is good and others around me are not wearing scents or have smoke on them.  It’s so frustrating to me to have my body be so limiting.

I decided to share this because I thought it might be true for other Rett girls too.  I feel content today, and I am so glad.

Love, Karly

 

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