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2877 PRACTICAL SUGGESTIONS LIVING WITH AUTISM WHEN BLINDESS AND/OR DEAFNESS IS ALSO PRESENT


Friday, July 13, 2007: 3:00 PM-4:15 PM
Merriam A & B (The Westin Kierland Resort & Spa)
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Communication is the key to establishing a healthy relationship with another individual. How can a family devise a meaningful communication system with an individual who is autistic and Deaf or blind? This workshop will explore the various modes of communication that can be used to bring out the best in individuals who are typically difficult to communicate with and may require creative interventions including Braille, American Sign Language and sensory integration. How is it possible to connect with a person who is autistic and blind or Deaf? There are so many more things that need to be considered when this additional “disability” is present. My presentation will be on key ways of connecting with an individual who is autistic and who has blindness and/or deafness as their secondary disability. The key to establishing a rapport is to understand thoroughly how the individual communicates and to structure an environment around the autistic and the communication needs.

I have extensive experience in this area. I am totally Deaf and my husband is also Deaf. We understand the “truths” behind communication from the time we were little. We struggled to communicate with our families and with the community around us. Yet we were able to overcome these struggles through the use of our American Sign Language – our preferred mode of communication. We also had additional struggles brought into our life when our second son Lance was born blind. I have learned so much from Lance and between my husband and I, we have devised alternative modes of communicating with our son. Despite our deafness and his blindness, we refused to let something like this get in our way. Then we discovered that Lance is also autistic. His needs demanded that we give him all that we had and establish a creative way of communicating with him. There wouldn't be anything in the world that we wouldn't do for Lance. Our doctors told us that the reason he couldn't communicate was because he had Deaf parents. Yet we knew from the time that he was 9 years old that something was wrong – even more so than the blindness. We suspected that he had something along the autism spectrum, but our doctors refused to confirm this diagnosis. They blamed us – Lance's parents because of our communication style. Ironically, we were about the only ones that Lance could communicate with. His father had taught him tactile signing (signing in his hand) and they could have in-depth conversations. Finally after many doctors and years of searching, we saw a presentation at ASA by Dr. Tsai. I took Lance to see Dr. Tsai and he finally confirmed our suspicions and diagnosed Lance as having some form of autism.

It is important that parents have the opportunity to attend these workshops and meet the experts in the field. Without the knowledge that I gained from the ASA, I might still be searching for answers for Lance. Yet this diagnosis made all the difference in the world. Lance is now enrolled in an autistic program at school instead of a VI program and he is succeeding in ways that we never could have imagined.

Most people asked us how we communicate with Lance. It has taken us a long time to teach Lance, yet we have succeeded in establishing communication with him. I know the experience I have gained can help other parents who have children that are dually diagnosed. While it may take a while to teach “proper” communication, we have succeeded and others can too. We felt so emotional and helpless and didn't know how we could make our son a success story. Yet we have. And so has he. He is enrolled in school and attends 5 general classrooms and he is popular at school. He is even in the orchestra. . So here is the question? What are the most important issues for children who are autistic and who are blind or deaf? What communication mode is needed? What kind of sign language is the best choice for an individual who is autistic and Deaf? How can an autistic and blind individual learn to Braille? How can parents communicate? How do the other members of family cope with this child and how do they need to be involved with the autism? How do you reduce the embarrassment of having a family member who is autistic and blind or Deaf? Do other siblings withdraw or “rise to the occasion” for their brother or sister? I will also share with you the issues that my older son Stefan faces in having to live with and help care for his blind and autistic brother. And finally I will discuss education options for the child. What is the best placement – a VI Program or an Autistic program?

Learning Objectives:

  • Alternative modes of communication for individuals who are Autistic and Deaf or Blind
  • How to integrate an Autistic individual into the Family when deafness and/or blindness is present
  • How to establish meaningful modes of communication
  • Parents and Teachers: working together to establish effective communication

Content Area: Communication

Presenter:

Judy C. Vardon, Parent
Community Volunteer
Deaf Community Advocacy Network

Vardon’s family was on ABC's Extreme Makeover: Home Edition in November, 2004. Their show hit record highs with 23 million viewers. Vardon goal is to bring to light many issues that face the Deaf, Blind and autistic communities. Vardon’s story focuses on the challenges she faces as a Deaf parent raising a blind and autistic son. Her story was featured in newspapers and magazines including The New York Times, Star Magazine, and TV Guide. The Vardon family appeared on Good Morning America and they were the keynote speakers for Detroit’s Deaf Celebration Day where she addressed over 1000 people.