Archive for April, 2008

When it is Real

April 30, 2008 · Filed under Facilitated Communication, Rett Syndrome · Tagged , , ,

April 30, 2008

I want to share with you how difficult it is to depend on others for all of your needs. I am not able to meet any of my needs without assistance. What that means is that I depend on others to not only understand my needs, but to meet them. If it was so simple to find great people I wouldn’t be using this space to write about it.

I am so saddened by the many people who have left my life. I wanted to have friends just like everyone else. I think most people have friends who choose to stay in their life. I am not the only adult in need of appropriate care. We have lost count of the hundreds of women who have left our lives since I was young. I am too sad to keep track. If I kept track of the losses, I wouldn’t be open to the new women who come into my life. If I were too sad I would not be open.

Our family is grieving for the loss of my best friend who left for Idaho last week. It is so different without her here. I miss our chats, and being able to depend on her anticipating my needs. I am expected to trust new people immediately. They are not my Mom. They think it is natural to go into the bathroom with me and undress me, to assist me in the most intimate needs of my life. It is NOT natural. It is painfully humbling to have so much need. It is something most people do not experience unless they have a severe accident or medical condition.

I want to tell everyone that there are great people in the world who are kind, caring and capable, but there are also those in the caring role to get a paycheck. It is for them that I share this.

Your role in our lives is far too improtant to have you show up for the money you can earn. I am completely dependent on your goodness and thoughtfulness. I cannot speak to you, so you need to anticipate my needs. Rarely do you attempt to communicate with me. You do for me like you would for an animal. You can check off the list of many things to do, but you do not get to know me. It makes my day so long and full of grief for me. I don’t want to have you in my life.

For those of us who are silent it is especially hard to get good care. I am expected to be patient with every new person that comes my way. They can either help me become the best person I am or hold me back by their ignorance of who I am. I think most women who fit this category choose to not get too close.  It’s something that makes it easier for them.

I wish for all of us in need of care, that the world would be kinder and that human goodness, tenderness and love would be the guiding principles. I am often told that I should go into a grouphome. There I would be cared for by staff who would never interact with my family who know me best of all. I would be expected to be in an environment that includes the high needs of other adults. That would be my life. I would be expected to be content with whoever shows up to care for me. The friends I would have are those chosen to live with me by the county. We have checked it out and determined that being home with family would be ideal, but it brings so many challenges into our home.

It is hard to be the person in need of care. I watch my family stuggle to meet my needs. It is not in my power to do for myself. Our lives are open to input and scrutiny by whoever we hire to work with us. I speak on behalf of thousands of us who live in each state in our country.

Karly

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I Live Because I Communicate

April 16, 2008 · Filed under Uncategorized · Tagged , , , , , ,

I know many of you are wondering how I type. I will share what it is like for me.  I was able to type the first day I was given a typewriter during my assessment.  The woman who did my assessment had learned from the best in the world at that time.  How she did it was she gave me picture cards, then moved up to word cards, then a small typewriter–all within the first day.  It was how she held my hand that allowed me to have intentional movements. 

I think it was because of her experience with others who are autistic that she gave me the opportunity.  My teacher and a therapist were at our home to watch the assessment.  My teacher was not in agreement with my intelligence.  She was vocal about it at school because she was certain her ideas about me were correct. 

I remember asking the assessor a question.  The first words anyone saw me type:  Can you record?  She was showing me the typewriter, and I wanted to know if it would keep the words I typed into it.  It was the first words my mom saw me type and it began a whole new life for us. 

Before I could communicate I was so oppressed, I wanted to die.  If I hadn’t learned to use FC I would not have had the will to live.  I wanted to do more than share my basic needs.  I had so much more I needed to say.  It was so exciting to find a way to share who I was. 

If my mom had believed what others were saying about me, I would still be doing meaningless tasks.   My mom believed in me when all others gave her no hope.  If we let others determine who we are, we will become so much less than what we are capable of.  My mom is the one person who didn’t let the beliefs of others determine who I am.

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Facilitated Communication Saved my Life

April 11, 2008 · Filed under Facilitated Communication, Rett Syndrome · Tagged , ,

When I was 9 years old, I started communicating with support using a keyboard.  Prior to that I had no way to share my thoughts, fear, pain, or wishes.  When I started to use this method, there was so much excitement for me and my family.  When the teachers and therapists heard that I was communicating at home, they couldn’t believe it.  In fact, they refused to believe it.  So for many years it was only at home that I had the opportunity to communicate.  When I got into high school, I had a teacher who believed in FC, but wasn’t allowed to use it at school. 

I am sure you are wondering why so many people question FC.  When I was first learning it, there was very little controversy.  But as time went on, some things started to happen.  As people were finally given a method to communicate, they started sharing their stories.  Their stories made some people look bad.  When a person who has been silent is finally able to communicate, they feel so excited to share.  What they don’t know is if they share something about being hurt by antoher person, that other person may get into trouble.  Since most people who are abusive do their deeds in secret, there is no way to find the truth.  The solution for many in this world is to take away the tool that would allow that person to communicate instead of looking at the truth.  It seems that whenever people try to study FC, they go about trying to disprove it.  For some reason, people seem to be afraid of what some folks have to say who have been silent.  I don’t understand it, but I have lived it.  We are left to sort out our feelings alone in silence.  I was so sure I would be given more opportunities when I started to share my thoughts, but it was not accepted.  When we would show the teachers what I was saying at home, they were angry because it wouldn’t be possible for someone with my intellect to say those things.  If typical people’s voices are taken from them, they would be outraged.  But for some reason, if a person who is silent for years starts to communicate, they are expected to say only nice things.  If we feel so excited that our behaviors change, then we are a behavior problem.  If you could imagine what it was like to be in a silent body, and could find a way to share some of your basic thoughts, you would be ecstatic.  For many of us without voices, we also have physical limitations, so our freedom to show what we want and need is limited.

It helps so much to have others believe in us and have us share our own solutions.  If you have doubt about someone’s intellect, they can work their entire lives trying to prove to you they are capable.  If you don’t have belief in their ability, you are the one holding back their voice.  It starts with you. 

Check in again and I will explain how it works for me.

Karly

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When I’m Alone

April 9, 2008 · Filed under Facilitated Communication, Rett Syndrome · Tagged , ,

In my head I have many thoughts but they’re not coming easy today.  I want to share what it’s like to be isolated from the typical world. I am fortunate that I’m not in an adult day program where others decide what’s interesting and fun, for adults who cannot speak up for themselves.  It is where you observe adults trying to cope by rocking and doing things that prevent them from going nuts.  If a typical adult was given so little to occupy their time and minds and bodies, they would likely look and act like many of my autistic friends.  We are not ignorant.  We are just not able to speak up at injustices to ourselves and others.  We are expected to be content that we are not starving or soiled.  When typical adults see us they are awkward in their interactions with us if they notice us at all.  I feel so fortunate that I am able to determine my own days with the support of my mom and friend.

Come back soon. I will write more when I am healthy.  I am home sick today.

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If the world only knew

April 4, 2008 · Filed under Facilitated Communication, Rett Syndrome · Tagged , ,

I am so incredibly pleased to have the opportunity to share in a way that is safe for me but has such a huge audience.  I am so excited to share with you today that even though my posts have been serious the response to them has been amazing to me.  I feel I owe it to my silent friends in this world to share my experiences, because even though we are all different, the human experience of living without a verbal voice is a painful and challenging one.  Thanks for hanging in there with me as I share some of my experiences of living in a silent body.  I am amazed at the beautiful responses I have received in only two weeks of starting my blog. 

Today I want to focus on giving dignity to those who are overlooked.  If the world only knew what we see, experience, feel, and understand, they would be very convicted by their actions and words.  I want you to know what my friend Bill Stillman says about assuming intellect, not just in people who appear intelligent and can carry on powerful conversations with you but for those even who are labeled like me to be “profoundly retarded.”  I think we will all find out one day that there is really very little difference between all of us.  We are all amazing humans living in a physical world.  God made all of us with spirits and souls and physical bodies.  Some of our bodies give us great pain and suffering even, but God is loving all of us.  I believe He is especially close to those of us who through no fault of our own struggle in this life.  If you want a profound experience with God, get close to one of His children who are not often seen by humanity. 

When we assume intellect we give as much care about what we say around someone who is nonverbal as we do in talking to a best friend.  If my mom had believed what all the professionals said about me for most of my life I wouldn’t have opportunity to share today.  If she had believed that I was “profoundly retarded” like she was told the tests determined she would not have given me opportunities that have enriched my life.  I ask you to consider what you would do differently if the person you know, love, or work with really is capable of understanding all.  You would be changed and so would they.  It is not an impossible task to just believe in someone.  Why is it that typical people are encouraged to develop themselves, speak their minds, and allowed to fulfill their dreams, but those who are silent are left to do the tasks that no one would choose intentionally for themselves?  I would still be working on some of the goals that were expected of me as a young girl of sorting shapes and matching colors dozens of times over, if my mom and a wonderful teacher who believed in me hadn’t put a stop to that awful existence. 

These things may be hard to hear but I beg of you to consider them.  What do you have to lose?  You will gain the respect, love, and powerful connection to the very soul of another human who isn’t heard with your ears. 

Karly

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When I’m Afraid

April 3, 2008 · Filed under Facilitated Communication, Rett Syndrome · Tagged , ,

I want to say today that I am so sad because my best friend is leaving. I am not going to say a lot about that because I understand she needs to go and help her beloved family. What I want to tell you is I am not able to find friends easily. I am so alone without a friend to communicate with. My mom and another friend are the only ones who have made an effort to fully communicate with me. 

Have you ever thought about what it would be like to meet someone and be expected to accept their presence in the bathroom while you are doing what you need to do in there and be comfortable with it?  It is something that adults and children who are dependent experience countless times in their lives. When others are unaware of the impact that has on our privacy and dignity, it hurts even more. If I have a caregiver that I trust, I am so grateful. It is profoundly sad when they leave. They are not easily replaced. I don’t want to assume that everyone who is dependent feels like I do, but my guess is that most do. Most people are with us because they need an income.

My friend who is leaving was not so. I love her, and I am so sad to say goodbye. She is our family. I need to find a great person.

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Real Friends

April 1, 2008 · Filed under Facilitated Communication, Rett Syndrome · Tagged ,

I was in a bad place when I wasn’t able to communicate. Now that I have my voice I am able to share who I am. I have choices in life. I want to share my thoughts with others. I have found that I am not shy. I want to give hope to others who have no vision for their lives.

I am aware of so many people, who through no choice of their own, are left to the systems that give us services. I know they are not living a full life. It would not be the choice of any person who is free to choose their own life.

When I am able to comminicate, my wishes and dreams are taken into consideration and I can determine what I want to do with my days.

If you are reading this you may be surprised what someone like me who is non-verbal, not able to walk and is visually challenged would want for their life. Many people think that those of us who don’t speak are not thinking or feeling or aware. When I am able to share my thoughts many people wonder if they are actually mine.

Thanks for checking out my blog. I am honored that you are interested in what I have to say.

Come back soon!

Karly

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