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from Fall 97 issue

Through a Grammy's Eyes

by Cora Taylor, Grandparent

The International CHARGE Syndrome Conference held in Boston July 25-27 was great! Meeting other families, hearing the guest speakers, and watching the "Chargers" adapting so well to their new surroundings was a wonderful experience for this grandmother.

Meeting other families offered an opportunity to show what each family has learned about CHARGE Syndrome from firsthand experience. Unlike our personal experiences where most often people (sometimes even doctors) have never heard of CHARGE, these parents (grandparents, too) know a great deal about the syndrome. It was very educational to see the children of different ages. It certainly helped to be able to talk about the various stages of development with others who have already passed the different milestones in their child's development.

The guest speakers were extremely knowledgeable on the subject. The were all very accessible to both parents and grandparents. Their different fields of expertise made available considerable information, both verbally and on the printed sheet to bring home. Their suggestions were both practical and realistic. The lectures themselves were extremely down-to-earth. The question and answer periods were super. Parents and grandparents offered their questions and received helpful answers. These too became a time of sharing among the parents and grandparents.

Seeing the children with CHARGE was a really rewarding experience. Their adjustments to their new environment were nothing less than spectacular. It was also great to get together as grandparents. We had a session with no parents or kids, and it was good to know that we all have the same goal as grandparents---just be there for our children and their children when they need us, no matter what the need is! I'm already looking forward to the 1999 CHARGE Syndrome Conference which will be held in Houston, Texas! Maybe we'll have more than one session for grandparents!

Editor's Note: Grandparents need support and information, too. Not only are they concerned about the impact of the disability on their grandchild, but they also worry about their own grown-up children. Grandparents need to connect with other grandparents, and a workshop or conference is a good place to begin. We have funds to assist grandparents and other important family members to attend training. Please contact us for information at (512) 206-9224 or 206-9418.

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from Fall 97 issue

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