DeafBlindness and CHARGE Syndrome

General Resources

Description of CHARGE syndrome's major features and impact on multiple body features including cognition, behavior, vision, hearing, swallowing, smelling, cardiovascular health, and growth.
Preparing for transition for families with DeafBlind children. The poster has multiple sections with community based organizations and resources for parents. DeafBlindness is a spectrum and most are not fully deaf and fully blind. There is a community and culture to support you. The most common conditions causing DeafBlindness include CHARGE syndrome, Usher syndrome, Down syndrome, and Cytomegalovirus. It is never too early to start planning for your child's future. Infancy - ensuring the family is supported. Contact the StateDeafBlind project. In Michigan this is DB Central. Also contact the National Center on Deaf-Blindness. Join condition specific parent and family groups like the National Family Association for the Deaf-Blind and The CHARGE Syndrome Foundation. Also take the Open Hands, Open Access modules available for free by the National Center for Deaf-Blindness. Birth to age 3 - building blocks. Create an Individualized Family Service Plan to gain access to interveners. In Michigan, you can work with Special Education Mediation Services. The building blocks for early literacy for DeafBlind child are focused on touch and communication. Touch communication includes mutual tactile attention, bodily emotional traces, and objects of reference. Work with professionals to determine the best communication modalities for your child, which may include American Sign Language, Braille, and Augmentative and Alternative Communication. School-age years and transition plans. Optimize the student’s IEP to include the Expanded Core Curriculum, which focuses on sensory efficicency, self-determination, career deception, independent living, social interaction, and orientation and mobility. Foster literacy through accessible learning opportunities, such as resources from the National Library Service for the Blind and Print Disabled. Access assistive technology resources through the National DeafBlind Equipment Distribution Program, also known as iCanConnect. Seek specialized opportunities for orientation and mobility skills, vocation, and independent living skills. For example, services are offered by Helen Keller National Center and Leader Dogs for the Blind.