Last night after I got my daughter out of the bath ans she started to cry. She had only minutes before had been really happy, splashing and kicking around in the bath but it was time for her brother to have a bath and as they both hate to share the bath it was her turn to get out and get dressed. My first thoughts were that she just did want to get out of the bath but as the minutes pasted it proved to be something more. The thing is that as she when she gets upset she loses the few words that she has. She just gets very cranky and you know she wants something but just can’t express it. She then gets more upset because she can’t communicate what she wants. It then progresses with me dressing her and trying to work out what she wants (and if it is appropriate at that time and place). This is something that is just part of our daily lives and is core to our reality … but it still makes me sad.
Living with 2 children that can not communicate verbally has taught me alot. I love to talk … and as the expression goes could talk under water. The ability to communicate is so central to my identity that I find it hard to think about a situation where I could not communicate. One of the hardest aspects of their autism … for me at least … is that I am unable to talk to them. Ever since they were both born I have been desperately wanting to talk to them. But this is something that has never really happened. And it is a source of frustrations for both them and for me.
Last year I was introduced by my children’s Speech Therapist to the Communication Bill of Rights. It is something that I now believe in very strongly. The ability to communicate and express our needs, wants, opinions, thoughts, feelings, and experiences are core to what makes us human and I think it a basic fundamental human right. Core to the notion of freedom of speech is the ability to express and communicate. What point is there to have the ability to say what you want .. if you don’t have the ability to say it. More needs to be done to support and fund therapy for non-verbal people to enable them to be able to enjoy this most basic of human rights …
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.