I wrote this today for a group of parents who have daughters with Rett Syndrome. It might help some people so we are going to post it on my blog.
My Mom has told me about this new group and that I could introduce myself when I was ready. Today is a good day and I am ready to tell you of my story. I hope that it helps you dream big dreams for your daughters who have Rett Syndrome. I am 26 years old. For most of my first 12 years we had never met anyone else who was like me. I didn’t understand what had happened to my body. It was a very hard life for many years. I suffered a lot of pain and I wasn’t given opportunities at school to show who I am inside. I lived with no way to communicate my needs or thoughts for 10 years. I was trying to tell my Mom and others around me that I was in here and wanted to be understood, but I couldn’t communicate that without extra help. I gave so much of my energy at that time. I was sad and scared and I cried a lot.
Since we had no idea about Rett Syndrome my Mom just kept trying everything she could think of. We read many books together with my sister who loves to read. We listened to books on tape, we listened to the radio and while my Mom played piano I sat on her lap and watched the keys. I loved music. We did this everyday until I was too big for my Mom to play around anymore. I haven’t had an easy life, but I have been surrounded by lots of love. My parents and sister are very musical and I was surrounded by many different kinds of music. I didn’t get much hope when I was in school but I got hope from my family. My mom believed in me and kept trying so many things to help me with my health and with my intelligence and with communication.
When I was 10 years old my Mom and I read about a man who lived in an institution most of his life. We read it together and I remember sitting so close to the words and watching my mom read the mans story and how he was able as an adult at 36 years old, to begin typing. His family gave him a chance and he was able to leave the institution. He even wrote a book. He needed help with his arm to type, because he couldn’t control much of his movements. But with the right kind of help, he showed that he was very intelligent and just waiting for someone to find out. I loved every word from his story!
My Mom didn’t know at that time that I had taught myself how to read by sitting on her lap and looking at the words as she read for so many years, and I figured out how to spell most words. So by the time I was given a typewriter, by a woman who believed in people like me, I could type words. I typed very slow. Many times I couldn’t type no matter how hard I tried because of my movements that I couldn’t control. But today, if you see me typing, you will see that I type very fast. I have been so fortunate. Much of my life has changed so much. I still struggle everyday with Rett Syndrome. There are times I can’t feed myself, times when hyperventilation and breath holding make my days really hard, times when seizures stop me, times when I have terrible headaches, or frustration I can’t control and anxiety that makes me feel crazy inside. Nights when I can’t sleep. Days when I can’t stop chewing, but with all of this I have a blessed life. I have a life that has great times in it. I am a speaker at times. I have written for a magazine. I have my own CD of music I have composed for piano. I am sitting here today with my miniature horse sleeping by my wheelchair. I have wonderful caregivers in my life, who have given me opportunities, because of their care for my body to be as healthy as I can be. I give them lots of credit because my family needs lots of help to care for me.
So today I hope you hear my story and are inspired to believe in your daughters. Because if you do, they will show you who they are and what they are able to do. Don’t believe that the tests are a good indicator of their intellect because the tests I was given in school show that I am profoundly mentally impaired. It’s not true and those tests caused me much trouble in my life. I can’t show you my intellect but if you believe that I have it, you will change most of all because you will try many things to help me become the best person I can be. That was my Mom’s belief and it worked for us. I have not forgotten everyday the sacrifices and struggles we have had.
Please don’t let Rett Syndrome be the only thing that is said of your daughter. It’s part of who I am but it’s not all that I am.
I asked Susan Norwell if she would be willing to write something for me to put on my blogpage. She has worked for many years with people who are challenged with communication. I had a great visit with her last Fall. She and I have written to each other by email since then. I am excited that she believes in Rett girls. We need people like her to believe in our intellect and not get stuck on our inability to express ourselves easily.
Dear Karly Bloggers,
I have been working with girls/women with Rett for almost 30 years. They have all taught be so much, that I wish I could go back and help those first two babies I worked with in 1980. I would have a lot more to offer them now. What I have learned, most importantly, is that Rett is definitely a motor disorder and the motor deficits that are affecting cognition is what we should be concerned about. Instead, professionals dwell on the “apparent” cognitive deficit (evidenced by the lack of motor response) and tremendously undershoot these girls.
I have lost count of the number of girls I have worked with, but this I know for sure….they are cognitively more capable than they are able to express and it is the lack of skill on our part that most hinders their development. So when I was asked to visit Karly to witness this young lady who was able to ‘Blog” and create music using FC, I was delighted and looking forward to learning something new from her.
For years I have utilized Facilitated Communication with my students with autism. I was trained by the original Biklen, Syracuse crew back in the early 90’s. I work hard to decrease support as soon as possible and many of my students have “proved” the typing is theirs by reporting experiences I did not partake in and by continuing to provide correct answers even after I shield myself from their choices. I never want to influence a student as that would be a dishonest portrayal of their abilities and would be unfair to all involved. I currently use FC with a young woman with Rett, who types more slowly than Karly, but clearly expresses her ideas and intentions using an AAC device called the tango!
Karly communicated via a keyboard facilitated by her mom. She was able to answer my questions and make appropriate comments throughout our visit. Her communication would sometimes halt as she lost the motor plan. In my professional opinion, this proved to validate her communication as those stops are consistent with the disorder. Karly had wonderful insights, a great sense of humor and spoke in a manner that is more like writing than typical speech. This is again something I have noticed with other students who use FC. They typically don’t use the slang we all do and are more precise in their communication, which is more similar to how we communicate in writing.
Karly is very blessed to have a mom that believes in her and others who support her communication and creation. There are so many girls who are not this fortunate and are still trapped by others’ low expectations. Please don’t leave any method, style or type of communication untried. We owe it to our “girls.”
Susan Norwell M.A.
Educational Specialist (Rett, Autism