There are several great resources to support educators and therapists working with children with Rett syndrome. Hopefully, you professionals out there are already linked up to these. If they are new to you, please feel free to join us!
If you are a parent of a child with Rett, please recommend these resources to the professionals in your child's life. Our kids are complex (as if I even need to say anything about that!) and the more current information your school team can get, the better. I say current because some of the old literature sadly underestimates our kids' potential. But I digress...
1) Rett Syndrome Educators Network sponsored by the International Rett Syndrome Foundation. This is a new, fast-growing group of professionals working together: asking questions, learning from experts, sharing ideas related to some of the unique challenges that come with kids who have Rett syndrome. Its goal is "to provide information specific to Rett syndrome and help educators better teach, guide, assist and care for the special angel(s) in their lives; it will provide guidance and direction while serving as a platform to contribute stories of accomplishment and lessons learned while sharing wisdom and encouragement." (taken from the professional invitation letter)
So far, members of the Educators Network has been privileged to hear presentations from Susan Norwell (communication) and Robin Brewer (educational practices) in conference calls. There are moderated email discussions to address specific questions asked by professionals in this circle.
2) Rett AT Ning at assistivetech. This online group is steadily growing as it discusses communication and educational concerns in a Ning forum. It's been a little quiet lately...maybe you have some burning questions to ignite good conversation?
Both of these groups have some of the most dedicated, creative professionals I would ever hope to know. Time and time again, I am humbled by the amount of energy and enthusiasm they pour into supporting our kids.
For families who may be dealing with overwhelmed or burned out teachers, I can't stress highly enough to encourage your school staff to get involved. The inspiration will find in these support communities will change their teaching. And YOUR child will be the one to reap the benefits.
Please sign up to be a part of a community of professionals like yourself that serve kids with Rett syndrome. Then let us know so we can welcome you!