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CHARGE Syndrome Foundation Webinars are provided with support from the National Center on Deaf-Blindness. If you have a suggestion for a future webinar topic, please send it to info@chargesyndrome.org.




2018-19 Webinar Wednesday Series

Watch for registration information in your email inbox or sign up for eNews now. 

January 16 – Impact of a Child with Complex Needs on the Family and the Importance of Self-Care – 8-9:30 p.m. EST

Presented by: Jana Villemez, LCSW and Family Consultant for CAYSI

This webinar will provide an overview about the following:

1)What research tells us about stress & our ability to cope

2)Things that can compound our stress & ability to cope

3)The importance of self-care and knowing your own needs, the needs of your child and your family to create a “Good Life”

2-Part Webinar Series on Communication Development

Webinar 1 – February 13 – Laying the Foundation for Communication Exchange:  Critical Points of Understanding – 8-9:30 p.m. EST

Presented by:  Dr. Susan M. Bashinski, Associate Professor at Missouri Western State University

This webinar will present a rationale for the argument that ALL individuals with CHARGE syndrome DO communicate—NOT that they all CAN LEARN TO communicate, but the fact that they already do!  The presenter will bust the myth, which often paralyzes families / teams, that “they’re not doing what they’re supposed to be doing,” by discussing the criticality of “meeting the learner where she is” and consistently responding to her observable behaviors in a predictable, consistent way.  Essential points for understanding a learner’s growth in the direction of conventional communication (i.e., from the starting point of nonsymbolic, non-intentional communication) will be presented and discussed.

Webinar 2 – March 20 –  Laying the Foundation for Communication Exchange:  Practical Strategies – 8-9:30 p.m. EST

Presented by:   Dr. Susan M. Bashinski, Associate Professor at Missouri Western State University

This webinar will extend and build upon the discussion from the presenter’s first webinar.  The presenter will provide potential communication partners with specific strategies they might implement to facilitate a learner’s growth in the direction of conventional, intentional communication.

Particularly when working with learners who experience complex disabilities, such as CHARGE syndrome, it is critical educational team members remember that the way in which a learner receives information might be different from the way she expresses information.  With this in mind, specific steps for the development of receptive and expressive nonsymbolic communication skills will be explained.  Possibilities for the incorporation of movement and the tactile aspects of life experiences will be discussed, along with the appropriate use of object cues and touch cues.


Lessons Learned – A Parent Panel
(Webinar Recording) (Closed Captions File)

Charting the Life Course
(Webinar Recording) (Closed Caption File) (Slide 48 – YouTube Link) (Slide 52 – YouTube Link)

Interveners: How can parents advocate for Intervener services for their children?
(Webinar Recording(Closed Captions File)

Interveners: What training is required and how can the need for Intervener services be determined?
(Webinar Recording(Closed Captions File)

Interveners: Who are they?  Why are they critical for individuals with deafblindness?
(Webinar Recording) (Closed Captions File)

Conference 101
(Webinar Recording) (Closed Captions File)

Ask The Expert: Q&A With David Brown
(Webinar Recording) (Closed Captions File) (PowerPoint File)

The Education of our Children: Helping Everyone Thrive with 3535
(Webinar Recording)
This webinar was provided with support from Perkins.

Strategies that Work in the Home and in the Community
(Webinar Recording) (Closed Captions File) (PowerPoint File)

Why Does My Child Do That? Compulsive Behaviors and OCD in CHARGE Syndrome
(Webinar Recording) (Closed Captions File)

CHD7 and CHARGE Syndrome Research: Unveiling the Mysteries
(Webinar Recording) (Closed Captions File)

A Conversation on Intellectual Assessment: What Parents Need to Know
(Webinar Recording) (Closed Captions File) (PowerPoint File)

Pain Issues in CHARGE
(Webinar Recording) (Closed Captions File)

The Forgotten Senses
(Webinar Recording) (Closed Captions File)

CHARGing Into the Teens
(Webinar Recording) (Closed Captions File)

Techniques to Improve Feeding Skills and Speech Clarity
(Webinar Recording) (Closed Captions File)

Top Ten Strategies for Promoting Positive Behavior
(Webinar Recording) (Closed Captions File)

Physical Education for Children who are Deafblind
(Webinar Recording) (Closed Captions File)

A Conversation about Intellectual Assessment: What Parents Need to Know
(Webinar Recording) (Closed Captions File)