(Pictures by Chantelle)

More on the 7th International Conference July 2005 in Miami Beach, Florida

(report two of a two part series covered by Ann Gloyn, Education Specialist) 

We continue our news coverage from the 7th International Conference on CHARGE Syndrome which took place July 2005.   Many families and individuals with CHARGE are already discussing the next International conference, which will take place July 27th - July 29th, 2007 in Costa Mesa, California. 

 

Feeding and speaking

Feeding and speaking have been key concerns expressed in by both parents and teachers of children with CHARGE syndrome.  Sarah Rosenfeld-Johnson, from "Talk-Tools" presented many practical therapies during her session at the conference. Sarah brought a variety of sample tools and therapies to demonstrate how goals can be reached in these areas. You can visit the "Talk-Tools" website for more information or write Sarah at info@talktools.net

Transition

Transistion is another key issue now being addressed by the parents of young adults who are beginning their life outside formal educational settings.  It was exceptional to be able to have experts like Joe McNulty, Executive Director of the Helen Keller National Center, with also Kathy McNulty, Mary Hancock, Betsy McGinnity, Amy Parker and Jenetter Peracchio.  These individuals outlined the importance of building a personal profile during future's planning.  They used the "Map" technique developed by Mount (1992). Kathy McNulty demonstrated how attention to preferences can help lead to the decision of what to place in the program.  Attention needs to be on the individual and their characteristics, desires, and what they enjoy spending time doing can help lead to potential work sites and industry.  This can also give insights into the types of recreational programs to include where learning can still occur. 

The areas for a successful and fulfilling adult life should include how to:

(Wiley 1997):

-make choices

-request assistance

-communicate frustration, disappointment, rejection

participate in personal care

-meet nutritional needs

-participate in the management of the home

-contribute as an employy or community volunteer

-initiate personally enjoyable and socially acceptable activities

-access and participate in community recreation activities, inlcuding transponration

-respond in emergency situations

- take greater responsibility for medical issues

While there is a maze of services and resources, the group was able to outline places to start, and had many suggestions for finding community support.  The most important lesson is that interdisciplinary team approaches are necessary and success comes with good collaboration.

Teaching strategies

Teaching strategies were presented by experts from Perkins School for the Blind.  Martha Majors and Sharon Stelzer talked about making learning "fun", with a functional curriculum that has highly motivating content.  Key strategies include language-based communication goals as a first priority despite the activity.  The use of the "Calendar system" , first developed by Dr. Jan Van Dijk, is an example of how to mesh language development and concrete experience.  They also stressed the need for total communication, although most children with CHARGE can only handle this once sense at a time.

CHARGE Syndrome Canada Newsletter Christmas 2005 <back to newsletter>