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The Matrix and Parents of Children with Autism in Kyrgyzstan
Amy Parker
7/2/2014 9:37 AM
I recently had a beautiful opportunity to speak to some parents of children with autism in Kyrgyzstan via skype. I was invited by a former doctoral student of mine, Rebecca Sheffield, who is passionate about the rights of persons with disabilities around the world. Rebecca has been doing advocacy work around the UNCRPD and became connected with this family group through those efforts. As the mother of a son on the autism spectrum, I was invited to share some of my own journey as well as professional insights on communication rights and access. This was both a challenge and a pleasure. In the absence of having formal services or access to special education, these families have used their own resources- both intellectual and financial to form a school for their children. Through a network and through the internet, they are inviting people around the world to be a part of their professional development efforts. It is truly an inspiring group. Before the meeting, I spoke with Charity about getting access to the Communication Matrix in Russian. She quickly gave me the materials and we were able to share these with all of the families who reviewed them before the session. As I talked about a personal journey with communication and my deep respect for Charity's work and the design of the Matrix, I felt a profound connection with the families. We talked across at least 7 time zones. They sat in a plain room with a laptop projecting slides about the Matrix, and Rebecca's and my skype images on a wall. Through the camera, I saw these mothers, and one man, a volunteer, sitting in plastic chairs and looking at the camera and the screen. Their translator, Jibeka, performed the slow and herculean task of sharing our messages from English to Kyrgyz (Kyrgyztan is bilingual with the official languages being Kyrgyz and Russian). They asked questions about their daughters and sons. We talked for over 2 hours. When I mentioned that Charity herself was interested in talking with them, there was a hushed silence and then Jibeka and the others on screen smiled broadly and looked at each other. They would be most honored to have her as a guest speaker at a future session. As they prepare to have a visit from the UN, it was wonderful to ponder that some of the work that they would be showing as a part of their efforts to develop programs for their children will be about the Matrix. It is my hope that this wonderful community and this profoundly influential work that Charity has led will impact more children and families around the world.
Symbols,Information,Autism,Outreach Events,Special Education,family leadership,international,program design,Professional Development
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Teachers:
Many teachers require their college students in communication disorders or child development classes to complete a Communication Matrix online. Please have your students use the Test Drive site for this purpose. You may ask them to print out the Profile and Communication Skills List as proof of their work.
Statement A
My child doesn't seem to have real control over his body yet.
The only way I know that he wants something is because he fusses or whines when he's unhappy or uncomfortable, and he smiles, makes noises or calms down when he's happy and comfortable. Does this statement describe your child?
Statement B
My child has control over her own behaviors, but she doesn't use them to try to communicate to me.
She doesn't come to me to let me know what she wants, but it's easy for me to figure out, because she tries to do things for herself. She knows what she wants, and her behavior shows me what she wants. If she runs out of something to eat, she will just try to get more, rather than trying to get me to give her more.
Does this statement describe your child?
Statement C
My child clearly tries to communicate his needs to me through gestures, sounds or language.
He knows how to get me to do something for him. He uses some of the kinds of behaviors below to communicate:
- Gestures such as pointing, shaking his head, tugging at my arm or looking back and forth between me and what he wants
- Sounds such as squealing to show you he wants something or fussing when he doesn't want something
- Language or symbolic forms of communication such as speech, written words, Braille, picture symbols, 3-dimensional symbols or sign language
Does this statement describe your child?
How to score your child
Each question you will see is related to a certain message that your child might be able to express using a variety of behaviors. Read the question and decide whether your child is able to express the message described using any of the listed behaviors. If the answer is YES, then you must also decide whether your child has mastered the use of each behavior or whether it is still at an emerging stage. Check either the mastered or emerging box next to any behaviors your child uses to express the message. Use the following definitions to decide whether a behavior is mastered or emerging
Mastered
– Does this independently most of the time when the opportunity arises
– Does this in a number of di erent contexts, and with di erent people
Emerging
– Does this inconsistently
–
Only does this when prompted or encouraged to do so. Only does this in one or two contexts or with one person.
Tips on Communication Devices
Each question you will see is related to a certain message that your child might be able to express using a variety of behaviors. Read the question and decide whether your child is able to express the message described using any of the listed behaviors. If the answer is YES, then you must also decide whether your child has mastered the use of each behavior or whether it is still at an emerging stage. Check either the mastered or emerging box next to any behaviors your child uses to express the message. Use the following definitions to decide whether a behavior is mastered or emerging