Before June (Effective Communication Month) is over, I want to squeeze in a post on the topic. Most people think the top priority for a girl with multiple handicaps would be to walk, but communication is what really tops the list. Effective communication that is.... Girls with Rett Syndrome are very good at communicating the basics: "something's wrong!" "something's great!" and "this is really really boring."
But how do people around them understand exactly what is wrong, great, or boring? How do Rett Girls go further to express a sense of humor, a dream, an idea, an observation?
Technology will be the key. And luckily that is moving at a fast pace. But the educational teams assigned to work with these girls are slow to keep up in many instances.
Nineteen years ago, the NJC (National Joint Committee for the Communication Needs of Persons with Severe Disabilities) published a Communications Bill of Rights. 1992 is a long time ago - we still need a lot of work in this area.
To share the words of our very own Kelly Butler whose daughter Brooklyn has Rett Syndrome:
I recently was made aware that there is actually a Communication Bill of Rights. As a mother of a disabled (non-verbal) daughter you would think I would have know about something like this. (Better late than never I guess!)
Anyway, as I began reading through the list I said to myself, "Everyone wants these things, I know I certainly do!" But then it hit me - and hit me HARD. Brooklyn doesn't always have these things....Rett Syndrome took them away from her. It is up to me to make sure she gets them back and keeps them, always.
Today as you make your choice for what you will have for lunch, take some Tylenol for that headache, go to the bathroom, talk to your friends, or even decide its time for bed - think about Brooklyn - and the millions of kids and adults that are non verbal and can't always make these choices for themselves and then be thankful. Very, Very thankful and maybe, just maybe - help fight for those who don't have these things - fight for them.
Communication Bill of Rights: All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.
Each person has the right to:
■request desired objects, actions, events and people
■refuse undesired objects, actions, or events
■express personal preferences and feelings
■be offered choices and alternatives
■reject offered choices
■request and receive another person's attention and interaction
■ask for and receive information about changes in routine and environment
■receive intervention to improve communication skills
■receive a response to any communication, whether or not the responder can fulfill the request
■have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
■have AAC and other AT devices that function properly at all times
■be in environments that promote one's communication as a full partner with other people, including peers
■be spoken to with respect and courtesy
■be spoken to directly and not be spoken for or talked about in the third person while present
■have clear, meaningful and culturally and linguistically appropriate communications
From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3
Click here to download a poster to display at schools and therapy centers.
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