Susan Norwell

My visit with Susan Norwell

October 16, 2009 · Filed under Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome · Tagged IRSF 2009 conference, Rett Gazette, Susan Norwell MS ED · Edit

Yesterday I got to meet Susan Norwell at my house.  She was so respectful of me.  She works with other girls with Rett Syndrome and also autism, so it was wonderful to see her and be encouraged to keep writing.  She introduced me to the Tango which she thought might help me communicate more easy with others who are not able to type with me.  It was an awesome week this week.  I have had so many wonderful things happen.  It gives me much joy.

Karly and Susan Norwell

Susan was so encouraging to me

My Mom read what was written about Susan from the Rett conference, so I asked her to write it for you.

 (This was taken from the Rett Gazette which is the International Rett Syndrome Foundation Newsletter-Summer 2009)

Susan Norwell presented at the IRSF family conference with two colleagues who are all communication experts with a special interest in Rett Syndrome.

…”some of the most encouraging, energizing sessions of the weekend.  Linda Burkhart, Susan Norwell, and Judy Larviere,  a power-house trio of communication experts in the field of Rett Syndrome, took the stage for the next few hours to show us just how possible it is to “capture the light in our girls’ eyes” and empower them with communication tools.  As their advocates, we can take the experts’ information and techniques to our educators, speech therapists, and assistive technology professionals and challenge them to help our girls communicate.  They encouraged us to move beyond testing our girls, and to create an environments that encouarges communication and learning as a process, not a test.”

 Love, Karly

January 2010:

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.

Love, Karly

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)

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