Archive for February, 2009

Something For My Eyes to Focus on

February 27, 2009 · Filed under Disability Awareness, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

I have written more about my vision on My Rett Body. 

Karly

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In My Own Words

February 20, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

I have added more information to my communciation page about how I have learned. 

Love, Karly

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How I Communicate

February 19, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome

I have started writing about how I learned to communicate. I will add more as I am able. It is on a new page, called How I Communicate.

karly

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I Am Amazed

February 18, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome

I am sitting her this morning with my Mom, feeling so happy.  We were gone for an appointment yesterday and didn’t get home until late in the afternoon.  We checked my blog when we returned and discovered that hundreds of people had been on my blogpage! This was a new experience. Usually there are about 100 each day.  I want to tell you about how much joy I feel over the messages many of you have left for me.  Your words of hope and encouragement to continue writing give me strength.  I am not sure how it happened and how all of you have discovered my writings, but I am really grateful. I hope you find even little ways that you can believe in your daughters because of my ability to share my story.  If there are other girls or women out there who can communicate with me personally, I would be so excited to hear from you.  I think our voices together will help so many of our silent Rett friends.  I know of at least four and I know there are others. 

 

I want to start by saying, if you have specific questions related to Rett, please let me know.  There have been other parents who have sent me specific questions, and if I am able to relate to it, I will try and write about it from my experience.  In some cases my other Rett friends who can communicate with a keyboard, have written with me.  You can find a couple of our writings on MY RETT BODY.

 

 I know there are some Rett girls and their families who are having a really hard time right now and I send my love and encouragement to you.  We have had those too and I know how painful it is for my parents and for me when they happen. 

 

We are very aware how fortunate we are that we have discovered a method of communication for me.  I feel responsible for sharing my story in the hope that my words may offer insight.  It has given me so much joy to have a way to do this and reach people around the world. I’m continually amazed that there is technology available that allows me to support people in countries I have never heard of and will never have the ability to travel to.

 

 I wish peace for your day. As of right now there have been over 900 people who have visited my site today. Thank you and Thank you for giving me notice…a young woman who is silent and is now being heard around the world, is nothing but a miracle, and I thank God.

Love, Karly

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My Emotions

February 16, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome · Tagged ,

I have written about my emotions and their effect on me, on My Rett Body. Check it out.

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Getting Past my Distractions

February 13, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome · Tagged

I wrote again about some of my experiences using facilitated communication and how challenging it’s been to find people who believe that girls with Rett are just silent, not unaware.  Check it out on MY RETT BODY.

Love, Karly

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Therapists

February 11, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome, Writing Memoirs · Tagged

I wrote some of my thoughts about all of the visits I have had related to speech therapy in an attempt to help me learn how to communicate in ways they approve of.  I had one of those visits today. So instead of getting really angry about, I decided to write instead.  I hope it helps my silent friends know that they are not alone.  I relate to their struggle.

Karly

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Moving On to Better Things

February 11, 2009 · Filed under Caregiver, Disability Awareness, DSP's, Facilitated Communication, PCA's, Rett Syndrome, Understanding Rett Syndrome

I am sitting here with my Mom this morning trying to express what is in my thoughts.  I have had a hard week.  My Mom is on a leave from her job so I can be cared for.  When someone walks away from our lives it leaves an enormous challenge for my family. If you need direct care and are reading this, I imagine you have experienced this too.  We are trying to find people with a higher standard for themselves. People who are compassionate and caring.  I want to say that I know my Mom has sacrificed so many things in order for me to have a quality life at home.  It has cost her a lot.  I am so glad that I still live at home.  I know there is no perfect place to live but being with family is so much better than some grouphomes I have visited.  I hope to be in a small home someday with a great friend.  I know that day may come when I will be leaving home, but I am so grateful in the meantime to be here.  We have little support right now, so it is hard, but I am praying for GREAT women.  If you have great care, you are very blessed.

Love, Karly

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I Can’t Imagine Why

February 8, 2009 · Filed under Caregiver, Disability Awareness, DSP's, Facilitated Communication, PCA's, Rett Syndrome, Writing Memoirs · Tagged , ,

One of the things that has helped me this past week, is writing. 

If you are fortunate enough to have great caregivers who you can count on no matter what, you are fortunate indeed. For those who have younger children in need of extra care, it is hard enough, but for those of us who have grown into adults and still require direct care in order to live and have meaningful lives, it becomes nearly impossible to find the care we deserve.  Our bodies are big, and have adult needs.  Our care is constant. 

Many young girls with Rett have extended families and friends who are actively involved in their care.  By the time I was 15, anyone who knew me and wanted to be involved in my care, had done so.  They were no longer able, and in many cases, uninterested to care for me.   My care frightens many people, not because it is so complex, but because they perceive it to be.  As a result we rely on strangers. We ask lots of questions and do lots of training and have been so disappointed lately. 

The person that walked away last week responded to an ad in our church advertisement paper.  She could be very caring, but to have her walk away without indicating that there was an issue, or even saying goodbye, causes me to not trust people.  Their words are sweet and smooth. They act so nice to me around my parents, but are often quiet and go about caring for me like they would the family dog when we are alone….feeding, toileting, minimal entertaining. 

My Mom is exhausted.  We now have two people who are gone.  She of course will do her best to care for me.  She cannot work at her job and be with me.  It is forcing her to make a decision. 

I speak on behalf of all my silent friends, when I say to caregivers: If you think this is a job you can do to earn some money, you need to check your hearts. If you are NOT caring, genuine, upbeat, reliable, honest, ethical, able to communicate problems as they arise, able to realize what families give up when they bring you into their home, then STAY AWAY.  Work at a shelter and take care of pets, and find out who you are.  Don’t pretend to take care of humans!!!  We have needs for companionship and intelligent conversation and accountability. Stay away  unless that is who you really are.

We are hurt more by your actions than by all the struggles we face as individuals living with involved disabilities.  Our lives are open before you and we deserve honor. Our families deserve respect.  We have a difficult path here on earth.  We need real, genuine and caring people to be in our lives.

And again I pray, please come quickly.

Karly

P.S. I have some wonderful women who have been with me for a long time, even some new ones who help out on the weekends, that I love and respect.  We are very grateful for them. We couldn’t do life without them.

Karly

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Hope For the Future

February 6, 2009 · Filed under Caregiver, Companion Horse, Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome · Tagged ,

It has been a bewildering week. The main caregiver I had during the week left and hasn’t called us, so we don’t know what the problem is.  I counted on her for 9 months.

I am expected to be comfortable around my caregivers.  If they only knew what I have experienced at the hands of caregivers in my lifetime, they would be amazed that I could trust at all.  Yet, in their need to be respected, they expect me to just go along with them.

They see me in my most difficult times and are with me in my times of accomplishment and great joy.  I never see them in their private lives.  I only see them in my home.  They are very eager to keep their lives private.  They are at our table for family celebrations and with me at the Dr when I am too weak to hold my head up.  My life is open to them.  They expect it.  I don’t understand how that level of involvement can be so easily dismissed by them. 

I am wondering if I am only a source of income for many people. They say the right words to my Mo, but their actions deceive them.  It is hard to count on people who are so heartless. They expect respect and trust from us, but are so disrespectful and act unworthy of trust.  It is incredible that there are people like that provding care to those of us whose very lives are dependent on them.

My hope for today is to find someone who is eager to be with me, who sees my talents and want to help me to be the best person I can be.  My Mom is that person for me, and we need help. It is too much for her alone.  I need people who care and would NEVER walk away without saying goodbye, who think to much of me and themselves to leave us hanging, wondering what happened.  Someone who doesn’t come with so many burdens of their own that they don’t know how to involve themselves in my life in a healthy way.

I have many reasons to be alive.  I don’t want to be a burden to anyone. So my hope and prayer for today is to find someone who is eager to be my helper. Someone who can see that my life is valuable…as much as their own. That God has given me a great family and friends and a beautiful little horse, who has cats!  Someone who wants to be involved.

Please come quickly.

Karly

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