Facilitated Communication Saved my Life

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.



4 Responses so far »

  1. 1

    Michelle said,

    I have been reading your blog with great anticipation, and I am amazed at the beautiful soul responsible for writing such inspiring words. My daughter, Sophia, also has Rett Syndrome. She is very sad and frustrated, as we have not found a way to allow her to properly communicate. But you have given us the greatest gift of all- the gift of HOPE- and I am forever grateful to you for sharing your story. To find a way to rescue her from the silent world she is trapped in…..that would be a dream come true.

    I love the pictures of you and Beau, too! I grew up with a Morgan horse, Sunshine, who was the sweetest horse I have ever met. He earned the nickname “Houdini” because he was an expert at opening any gate, and got into trouble many times for letting himself (and his friends) out of their stalls.

    It has been a pleasure to read about your journey, and I look forward to reading more!

  2. 2

    Stephanie Stearns said,

    Hi Karly,

    I, for one, am so happy you did find a way to communicate and share your feelings with all of us! I’ve written once before and told you about my daughter, Emily, who is 7 and has Rett Syndrome. Today, I showed her the letters on the keyboard of my laptop. She seemed slightly interested, but was more interested in Sponge Bob at that particular moment. We will keep trying, though maybe we should turn Sponge Bob off while working at the computer. She’s full of spunk! I know, like you, she has alot to say, too!

    We love your blog! Thanks for sharing.

  3. 3

    Sandy said,

    I am so glad you are speaking up! The world needs more people like you to speak for those who cannot speak for themselves! You are proof positive that just because you cannot speak the words with your mouth, doesn’t mean you do not have a meaningful story to tell. I am so grateful that your Mom has always believed in you and stuck by your side. Tell You Story! Do not be afraid! The more you tell your story the more people will sit up and listen. Your story will encourage others to find a way to tell their stories – one by one you will educate the world – the better educated people are about something, the less afraid they will be. Those who hurt people who cannot speak for themselves are the lowest of the low and they should be exposed!!
    So, I encourage you to tell your story every chance you get, and I can help get the word out, I would be more than happy to do so!!!
    Give Beau a hug and kiss – and a carrot!
    Love Sandy

  4. 4

    terri said,

    I do inhome care for the elderly and children with disabilities and i have had the awesome duty to
    work with a wonderous young girl with rett syndrome and she was the sunshine of my day she to has an awesome mom and dad they do everything posible I would love for her to beable to communicate in this manner Kayly you sound wonderful

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