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.

Daddy Shares All About Raising a Daughter with a Disability

I recently read a book, “Schuyler’s Monster” about a father’s experiences with his daughter, Schuyler, and her disability. Robert Rummel-Hudson refers to his daughter’s disability as a “monster” throughout the book that left her unable to communicate verbally. His honesty regarding what he went through before, during, and after diagnosis offers real understanding for professionals and may allow parents to feel understood or not alone. Although some parents and professionals may not like his opinion about disabilities or religion, I found the book to be inspiring and full of hope. Schuyler’s parents never give up on helping her have her own voice through a speech generating device. “Schuyler’s Monster” is a book for all individuals who work with kids who have disabilities.

And if the book leaves you wondering what is going on now for Schuyler, you can read Robert’s blog to find out more!