October is Rett Syndrome Awareness Month

October is a great time to learn more about Rett syndrome since it is Rett Syndrome awareness month. Rett syndrome is considered a part of the Autism Spectrum. It used to only be diagnosed in girls, but as researchers find out more, Rett syndrome is beginning to be diagnosed in a small number of boys.

There are lots of activities going on throughout the southeastern states this month. See if you can get in on the fun and learn a little about Rett syndrome in the process.

Blue Sky Girls of Alabama
October 13, 1012, 9:00 am Alabama State Capital Building, Montgomery, AL

Blue Sky Girls of Georgia
October 13, 2012, 11:00 am Georgia State Capital Building, Atlanta, GA

Black Out Rett Syndrome
October 27, 2012, 7:00 pm Celtic Media Center Baton Rouge, LA
A musical evening with Clint Black

One of the main areas affected by Rett syndrome is communication. Many girls (and boys) with Rett may not talk and will need a communication system developed to help them communicate and participate in school, at home, and in the community. Depending on whether the child has functional use of her hands will determine if the communication system should focus on a system that is activated to talk by touch or whether an eye gaze and/or use of head will work better. There are many amazing Augmentative and Alternative Communication (AAC) systems and it is important to find the one that will work best for your child. Companies such as PRC and Dynavox make high technology devices for children that include eye gaze technology or head pointing systems that allow children to communicate by looking at a particular picture/word on a computer screen or slightly moving their head.

One of the most important things to get children with Rett syndrome communicating is “yes” and “no.” “Yes” is usually taught by getting the child to look straight at the person asking the questions, while “no” is usually taught by getting the child to look away. Once you have a firm “yes” and “no,” you are on your way to a communication system.

To find out more information about Rett syndrome or what you can do to help, visit the International Rett Syndrome Foundation website.

Learning about Rett syndrome in “The Big Easy”

I am preparing for and getting excited about the 7th World Rett syndrome family conference next week, June 22-24, 2012, in New Orleans, Louisiana! For those of you who are not familiar, Rett syndrome is a developmental disorder that is diagnosed in 1 in 10,000 girls. A child with Rett syndrome will have a period of typical development, followed by a period of slower development or regression. Some signs of Rett syndrome are loss of communication skills and functional use of hands. Signs of Rett syndrome may be easily confused with autism. If you would like to learn more about Rett syndrome, you can learn more at the International Rett Syndrome Foundation:

This year’s conference is especially exciting because it is the first time the United States has hosted this conference. The World Rett syndrome family conference will not only focus on medical issues, but also educational issues such as communication and learning. The following link will take you to the website if you want to learn more about the conference:

UPDATE…The 7th World Rett syndrome congress provided a variety of information for parents and professionals alike! I was surprised to learn that characteristics of Rett syndrome vary widely from girl to girl. Another thing I learned was that Rett syndrome is not exclusively diagnosed in girls anymore, depending on the gene that is affected. It was a busy weekend with lots to learn from focuses from sleep patterns to reading to communication and sibling experiences.