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.
I have been very sick this past week, so I am not able to write more, but I wanted to share this with you.
Dear Karly Bloggers,
I have been working with girls/women with Rett for almost 30 years. They have all taught me 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)