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Una publicación sobre discapacidades visuales, y sordera y ceguera, para familias y profesionales.

Spring 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Josh Fultz, Texas CHARGERS Board Member, Navasota, TX

Abstract: A Board member of Texas CHARGERS, Inc, a nonprofit organization for families of children who have CHARGE Syndrome, shares his thoughts on the group's 3rd Annual Family Retreat, which drew families from across Texas for a fun-filled day of fellowship and learning.

Key words: Family Wisdom, deafblindness, CHARGE Syndrome, family retreat, training

The hot Texas wind made a strong cooling shift to the north, welcoming participants to the 3rd Annual CHARGE Retreat held at the Merritt Bois D' Arch Buffalo Ranch in Denton, Texas. Anticipation was high among those who had waited all year for the event, which was originally scheduled on the same weekend as Hurricane Ike's arrival, and had to be postponed until November 16th, 2008. The wait was well worth it.

Over 30 families made the journey with approximately 150 total attendees. The Texas CHARGEr board, as well as many others behind the scenes, had worked diligently to make the rescheduled event happen, and to make it the retreat everyone had looked forward to.

The activities began on Saturday morning during registration when family members received their CHARGEr designated shirts and thus began the reunion of friends old and new. Volunteers designated by white shirts waited anxiously inside the door to meet their little CHARGErs. The day had been well planned with lots of emphasis on fun for the kids, including arts, crafts, games, scavenger hunt, hayride, and many fun events.

While the kids were being entertained the parents, grandparents, and siblings were offered educational information in the form of a speaker's panel from Texas state agencies. Agencies attending included TSBVI, DARS, Helen Keller National Center, and an Education Service Center Specialist from Region 13. They discussed the challenges of deafblindness. It was a poignant reminder to everyone that there is help out there.

The lead speaker Amy Parker, a doctoral student from Texas Tech working with the National Coalition on Deafblindness, explained her goal of helping gain assistance from the federal government for children with sensory impairments. She indicated that the funding for deafblind children has stayed generally the same, 12.8 million dollars, for the last 20 years. She assured the audience she was working to get that number increased, and asked for assistance from participants in supporting the increase.

Always emotional and thought provoking, the parents panel gave the unique perspectives of those parents dealing with CHARGE. Five parents of children with Charge Syndrome ranging in age from 6 to 26 participated as panelists. The parents shared their struggles and their achievements parenting children with CHARGE. One parent compared raising a child with CHARGE to swimming up a waterfall; one should stop and take a look back because the view from a waterfall is beautiful. The profoundness of the statement struck a deep chord with all.

Also included in the day's activities were the varied forums. Participants could attend the most appropriate one, including different forums for fathers, mothers, and grandparents. The fathers sat in a large circle downstairs and shared their experience with challenges of parenting a child with CHARGE. Also discussed were the differences in dealing with charge as fathers compared to mothers. Each father praised their wife/girlfriend for all the support and additional responsibilities that the role of mother entails.

The mothers met upstairs in the loft meeting room and discussed how important it is to take time for themselves, as well as being the best moms possible for their CHARGE kids. They shared their ideas and shared stories of how their CHARGE child has made them laugh or smile. It was a great bonding time for all the mothers. They also discussed the frustrations and emotional challenges of being the primary care giver to a child with special needs. The grandparents networked and discussed the many facets of being grandparents to a CHARGE child, including concerns about their children, the parents of CHARGE children. Each forum provided an excellent and unique opportunity for openness and honesty in sharing ideas and mindsets.

After serious the discussions, it was time for a little fun. Everyone was lined up to immortalize this 3rd retreat in a group picture. Then it was time for some good eats. Not only was the meal great, so was the 2008 Star Charger, Kayla Ortegon. Kayla shared her life challenges with CHARGE. Everyone was delighted when she declared, I have CHARGE Syndrome, but I like to think of it as I am in charge, and can do a lot about it.

Kayla's goal included helping other people in life, and she thanked her family for all their support. She stated she considered herself just like any other young woman.

Following dinner, a genuine Texas CHARGER Hoedown, was celebrated with a bonfire and smore's, music, popcorn and cotton candy. Everyone danced and played with one another, bringing to end another educational, emotional, and life changing retreat for families and children with CHARGE.