Communication

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.”

Take CHARGE with Total Communication! 

Total Communication is an approach that uses a combination of verbal speech, sign language, symbols (e.g., photo/picture symbols, tactile symbols), meaningful use of whole objects, gestures, actions, facial expressions, communication devices, etc. This approach exposes students to multiple modalities to support both receptive and expressive language. A student may communicate using one or a combination of modalities, and we honor and shape all modes. During this presentation, we will discuss the benefits of using a Total Communication approach with our students who are diagnosed with CHARGE. This webinar discusses the possible ways communication can develop along with the strategies the presenters have implemented to facilitate communication growth and how to implement various communication strategies at home.

Presented by Kathryn Bleczinski, Christine Cammisa, Neha Sharma, and Amber Skerry are Speech-Language Pathologists (SLPs) in the Deafblind Program at Perkins School for the Blind in Watertown, MA.

Resources:

Ask the Experts-Take CHARGE with Total Communication! Slides

Communication System Benefits and Drawbacks Chart

Finding the Right Communication System

Questions and Answers

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.

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