The development of symbolic language can be challenging for individuals with CHARGE syndrome. Because of the wide variety of features seen in CHARGE, as well as the variations in severity for each of these combinations of features, there are many possible causes for the difficulties experienced in acquiring symbolic language. It is critical to work toward developing an effective communication system as early as possible – even in the midst of the many health issues that babies and young children with CHARGE experience during the first years of their lives. Dr. Sandra Davenport, one of the founders of the CHARGE Syndrome Foundation, wrote the following about communication for a section of the CHARGE Syndrome Management Manual: “The earlier good communication starts and the more people that develop good communication with the child, the happier and more successful the child (and parents, etc.) will be.”
Influence of Sensory Loss on Development– this article explains the effects of sensory loss in relation to communication, explains the communication “bubble,” how communication affects development in terms of the ability to accurately assess children with dual sensory loss and underscores the importance of developing a formal communication system at home and school.
Factors related to the development of communication in CHARGE syndrome – Dr. James Thelin and Jill Fussner’s paper on the factors that are related to the development of symbolic language in CHARGE syndrome. They discuss the three major factors, as well as others that are related to the development of symbolic language in CHARGE.
ASHA CHARGE Syndrome Web Program – Developed for audiologists and speech-language pathologists (SLPs), this video series focuses on audiologic issues, issues for SLPs, research on communication in CHARGE as well as resources for professionals, parents, and individuals with CHARGE.
Speech and Language Therapy in CHARGE Syndrome – In this section of the CHARGE Syndrome Foundation Professional Packet, Lisa Anne Guerra, MS, CCC-SLP discusses some of the factors specific to SLPs working with individuals with CHARGE syndrome, including assessment strategies, the use of total communication, and established routines.
Many ways to have a conversation – This article written by Martha M. Majors, Assistant Education Director, Deafblind Program, Perkins School for the Blind, is based on a presentation at the 10th International CHARGE Syndrome Conference in 2011. She discusses the unique ways in which students with CHARGE have meaningful conversations and the common strategies and modes each child can access.
CHARGE Syndrome: The impact of CHARGE on Communication and Learning – In this webcast, Martha Majors discusses communication and learning for individuals with CHARGE in the educational environment.
CHARGE Syndrome Communication Factsheet from Sense UK
Assistive Technology for people who are Deafblind
“Assistive technology can be high tech or low tech. It can be used for communication, computer skills, mobility, learning, play, independent living, and much more. We live in a world where technology is constantly changing and improving. It is important to remain up-to-date on changing opportunities presented by technology for children who are deaf-blind.”- NCDB
Communication Technology for Persons Who Are Deafblind
“In this webcast, Jerry Berrier provides an overview of a variety of communication technologies for individuals who are deafblind. Jerry presents a historical view of different devices that have been used in the past and compares them with the technology that is available today.”
Technology for students with multiple disabilities
Paths To Literacy- for students who are blind or visually impaired
The National Deaf-Blind Equipment Distribution Program
For additional information about the program: www.fcc.gov/NDBEDP
iCanConnect advertises and promotes the National Deaf-Blind Equipment Distribution Program, and provides technical support and service information to people experiencing combined hearing and vision loss who may be eligible for the program’s services.
National Center on Deaf-Blindness
345 N. Monmouth Avenue
Monmouth, Oregon 97361
It is a national technical assistance center funded by the federal Department of Education. Programs include intervener services, early detection, technology solutions, literacy, and transition services.
175 North Beacon Street
Watertown, Massachusetts 02472
Offers a comprehensive training program for students 30 to 22 years of age. Day program and residential program as well focusing on language, O&M, adaptive physical education, computer technology, assistive technology, vocational training, and transition services.
Deafblind resource list from the National Federation of the Blind