Archive for January, 2009

Going to The Dr

I’ve had so many Dr’s appoinments in my life. I know I’m not the only Rett girl whose life seems to revolve around these ridiculous appointments.  It’s not fun to have to go to Dr’s appointments for an outing!  It would be so great if the Drs were treating us as they would any other child our age who doesn’t have Rett Syndrome.  Speak to us, not about us.

Check out my new post, on My Rett Body.  My Mom is trying to figure out how to rearrange that page so that last post is on top.  Please be patient with her.

Love, Karly

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Recovering From a Seizure

I wrote today about seizures on My Rett Body page.   I must write.  It relieves some of the frustration of living with Rett.  I am eager to feel better, but since I am recovering today, I wanted to write about how it feels after a seizure.

Love, Karly

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Waiting For Someone

It is a sad day for me.  We waited on Friday for the person who was suppose to come at 2:30.  My Mom was here because there was a therapist at our house for me.  My caregiver Stephanie, waited until 2:45 to leave for her other job.  The person we were waiting for never came, never called and never resonded to our two calls.  It wasn’t until Saturday morning at 11 that she called with her story.  It was a family drama and she didn’t have her cell phone to call us, blah, blah, blah…It may be true, but she left us in a bad place.  She has not come for many of her shifts lately,  so we let her go today.

I have a message for people like her.  If you really want to care for someone,  you need to have some responsibility.  Your actions are very hurtful.  I have let you into my life, sometimes because you are my only option.  You have seen my most private moments.  You have been with me when no one else is around.  My life depends on you.  If you choose to ignore me while I am sitting on the toilet, I can’t get up and leave.  If I am eating and I run out of a drink, I can’t even tell you because you haven’t taken the time to learn to communciate with me.  I depend on you to initiate the questions.  If my bath water is too hot, I can’t change the temperature.  I get so hot I get sick, and I wait until you decide to take me out.  I am so aware of scented body lotions, fabric softeners and hair products that stink, and I can’t get away from you, when you are brushing my teeth or changing my clothes or helping me stretch. 

Our relationship is dependent on you taking the lead.  You have not acted like a leader.  You left me hanging.  I would be in a desperate spot if my Mom wasn’t available, like it did when she and my step-dad were out in South Dakota.  It makes me very sad and anxious to be disrespected like that. 

Since I am able to communicate I share this on behalf of my silent friends and their families everywhere.  If you have drama, or compulsions, or addictions in your life, you bring them into my life.  You may be a wonderful person when you are on a good day, but when you aren’t, you are a huge grief to us. 

Where are the kind, stable, respectful people?  I can’t speak badly about most of the women I have in my life now. They are my allies. 

 I also cannot ignore how sad I feel today.


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Sensitive Is Our Middle Name

This is one of the posts I have been working on with my friends.  I have been so happy that I now have three other friends with Rett who use facilitated communication.  It has been great to connect with all of them.  My friend Elizabeth has allowed me to quote her.  My friend in England is not ready to be quoted, but has allowed me to include her.  Much of what Elizabeth and I shared is what our other two friends say is their experience too. 

Please read our new post on My Rett Body page.

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It May Seem Impossible

I sit here this morning filled with hope and joy.  We spoke with my new friend Tammy’s mother yesterday.  This world feels a little less unfriendly because of the connnections we have made with each other. 

To put our experiences into words is something that has overwhelmed us, yet our hearts are very much the same.  Our lives have been lived very far apart.  Yet we have been brought together through the use of technology.  To find three other women who have Rett Syndrome and can communicate, and who have struggled to be seen and understood, in bodies that have betrayed their intellgience, gives me hope that the girls now being diagnosed will have a better life. 

I can only credit God with the miracle of us finding each other.  It could never have happened if it was us.  You see, to live in a silent body, is to be unseen, only noticed for the wrong reasons.  If our drooling, our movements uncontrolled by us, or hand flapping or breatholding are the only things seen by people, then we are isolated.  I want to give all the Moms of my three friends with Rett who can communicate, an enormous hug.  Because my body won’t allow me to do it while here on earth, I will be waiting for you in heaven , to give it to you then.  You have believed in us when the professionals and friends and family have not.  You have defied the beliefs of others and in doing so, have given us a voice.  We have found each other and while all of us may not be ready to share in our own words yet, we are united in our experiences.  It confirms for all of us it is Rett Syndrome which has taken over our bodies, not who we are as people. 

I have had more exposure than my three other friends because of my blogpage, and I have found great encouragement in how much it has helped others.  I hope you hug those you love today.

Love, Karly

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Four Rett Women

I have had an amazing day. Just after we posted our first blog today I got a message from a Mother who has a 44 year old daughter who has Rett Syndrome.  She has used Facilitated Communication for sixteen years and didn’t know anyone else who could communicate.  It is so exciting and reassuring for all of us to know that we are not the only ones who can communicate using Facilitated Communication. 

I know this may not seem all that remarkable to many, but for us it’s miraculous.  Each of us has struggled in our own silent world for all of our lives, because we were thought to have low intellect.  If the tests indicate we have low intellect, our ability to prove otherwise if we can’t demonstrate it easily, is impossible. After we are given the diagnosis of Profound Retardation, the opportunities given to us only reinforce what they believe about us.  They offer activities they would to a toddler and wonder why we have behavior problems. 

For today, all is right with our world. There are 4 of us!!!

Love, Karly and the Rest of Us

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Three Rett Women

I am so glad to share with you today that Elizabeth and Ali are writing two blogs with me.  Elizabeth and I have been writing our response to what seems like typical experiences for most people, but when experienced by us, it is very different.  We sent our draft to Ali in England, who is so excited because it also what she experiences.  We are in the process of getting all our ideas put together in these two blog entries.  We are all very excited because we discovered that what each of us thought was only our experience, is shared by all three of us.  We are all in our twenties, but we have great memories.  Elizabeth and I remember things that happened when we were one year old.  I haven’t asked Ali but I think we will be writing a blog about that too.

Because there are so many young girls who haven’t found their voices yet,  we may be able to help them by sharing our memories of what we were experiencing.  I have been writing for almost 1o months now, so I have become braver sharing about my life.  It is a new experience for Elizabeth and Ali, so they are being cautious about what they share.  They want it to be accurate and I respect that.  I’m trying to be patient but I am eager because the inf0rmation is new.  It has helped the three of us to talk about this together.  It has given our struggles words.  I hope to have them posted this week.  I am really happy we have found each other. It’s been so good for all of us to know we are not alone and to know that what we are living can be helpful to others.  We don’t feel ready to have our lives exposed but we hope that by sharing parts of our story it will change peoples thinking about Rett. 

I wish Ali could be here with Elizabeth and I.  I am so glad my sister set up my email for me and my friend Sandy, encouraged me to start my own blog.  It has changed my life and I hope the lives of many other Rett friends and families. 

 I am so happy to hear from so many people who have had their minds open to the fact that the Rett girls they know are only silent, not unaware and ignorant.

Love, Karly

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I Live With Hope

I woke this morning and while I was praying I felt so much joy.  I didn’t realize how much other Rett families needed to hear from those of us who live with Rett Syndrome and can communicate.  It is with great excitement that I share with you that both of my other friends with Rett are interested in sharing their experiences with you.  It take us longer to write together, so I can have their approval before I post.  I don’t want to include anything that doesn’t make them comfortable.  Much of it is personal but it has been so encouraging to me to discover how much we are alike. 

 Our experiences as young girls, and even now, are similar.  The feelings we have in our bodies and the acts that we do are very alike.  It is so exciting to me to have them willing to share, because for us even, it has been miraculous to find out about our similarities.  It makes me feel less alone.  I know that other families with Rett girls are struggling  to find out how to help their daughters.  I think we can offer some insights that might be helpful to you.  We will be writing as we are able.  I am meeting with my friend Elizabeth on Monday to ask for her help on writing an entry about nighttime feelings

Love, Karly

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My Friend Elizabeth

I had an exciting day today. My friend Elizabeth has Rett Syndrome and can communicate.  She came to my house today with her parents for a visit.  I was so happy to see her.  She moved into a grouphome last summer, so it has been a big change for her.  She uses facilitated communication to communicate too. I emailed her and asked if she would like to share some of her experiences with Rett.   It was so fun to have her say she was ready to share her life’s experience with Rett!  She was so shy before and didn’t feel like she wanted to share her thoughts. We are working together on a blog entry.  It will take a little while but I hope to see her next week to have her approve the entry. 

It was so good to have both of us in the same room trying to figure out how to best explain our experience of waking up at night. We both struggle with it.  She screams which I don’t do, but what we are feeling while in bed is the same.  It was wonderful to be able to share that with each other and have our parents ask questions.  We will be writing about that.  I think it will help all of us, as well as other Rett families.  If she allows it, I will post a picture of us together.

Love,  Karly

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My Writing Process

I thought it might be interesting to share how I write my blog.  It takes three of us to get it done right.  I usually tell my Mom that I have a blog ready to go.  We wait until either Gregg or one of my caregivers is available to write down what I type.  My Mom is my facilitator while I type.  She says my words out loud and they are written down in my notebook exactly as I type them.  Sometimes I type so fast that the person that is writing has a hard time keeping up, so I have to pause.  I title my blog at the beginning of my writing.  When I am done typing, my words are read back to me.  If I need to make changes, I change them at that time.  When I am satisfied with the piece, I then wait while my Mom types my writing into my computer.  When she gets done she reads it back to me and my writing person helps with the computer.  It is at that time that I decide where to put my paragraphs and commas and quotes.  We then decide which categories to post it under on my blogpage and if it should have any extra tags. 

There you are.  It is exactly the way I want to have it by the time you read it.  I try to write in the mornings because that is my best time. I get so tired later in the day, so I try to do it before we get going in the mornings. 

I hope it is warmer where you are today.  It is 18 below zero here.  My horse Beau loves the winter and is bucking and running around between times when he is eating hay.

Love, Karly

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