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Winter 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Patti Feagin-Sexton, Grandparent, Conroe, TX

Abstract: A grandmother shares highlights of the Fourth Annual Texas Chargers Retreat, which was held October 23-25, 2009 at Camp Allen.

Keywords: , grandparents, CHARGE Syndrome, Texas Chargers, family organization, retreat.

 

A bright Texas sun and a cool crisp autumn breeze whispering gently through the giant pines of east Texas greeted participants, and provided a beautiful backdrop to the Fourth Annual Texas Chargers Retreat, held on October 2 -2 , 2009 at Camp Allen, Navasota TX. The facility is located in the midst of the piney woods of east Texas, and as promised, gave a welcome respite from the hustle and bustle of participant’s daily life.

Forty families were welcomed with a total of 240 participants. Families were greeted on Friday evening, receiving their welcome bags including t-shirts for each member of their family. A short presentation was made by Kathleen Stremel Thomas, who has worked in the area of communication and language assessment and intervention for children with severe disabilities and deaf-blindness over the past 9 years. Kathleen spoke regarding her research on cochlear implants, and intervention for children who are deaf-blind with cochlear implants. She encouraged parents to participate in the study currently being conducted across the nation. (Editor’s Note: If you are interested in participating in this cochlear impant study, please contact Kathleen Stremel Thomas at <>, or the Texas Deafblind Project at 512- 206-9225).

On Saturday, families attended a several general sessions and breakout sessions designed to meet the special needs of each of the family members, including, fathers, mothers, and grandparents.

Saturday’s general session began with a presentation by David Wiley who spoke about funding and programs available both on state and federal levels to assist families. HIPP, Private Health coverage, SSI, and other resources were discussed and participants were able to field questions regarding obtaining the appropriate resources for each family. This website is a reference for information about the quality of DADS long-term care programs: http://facilityquality.dads.state. tx.us/qrs/public/qrs.do

A presentation was made by Robbie Blaha and David Wiley on the topic of the importance of “Person-Centered Planning.” Lessons gained from the discussion on person-centered planning included reaching out to resources, believing in yourself, and the importance of self-education. It was agreed that patience and perseverance in dealing with the system was key in obtaining the services needed. Use of stories, Bio Poems, and assessments can not only be useful, but are vital in mapping out the goals for CHARGE students. IDEA (Individuals with Disabilities Education Act) makes parents and caregivers key players in determining the appropriate goals and education methods for their CHARGE child. When planning adult life for individuals with CHARGE, it is important to establish a lifestyle plan, rather than just applying to programs. The use of interveners and extended family support are equally important when planning for in a meaningful adult life.

A parent’s panel openly discussed the joys and challenges of being a CHARGE parent. Questions were presented to each member by a facilitator, and then general questions from the audience were discussed.

Many of the children who attended the Fourth Annual Texas Chargers Retreat last fall at Camp Allen, near Navasota.

During the breakout sessions, each family member was given an opportunity to discuss their questions, thoughts, and challenges pertaining to their role. Sessions were emotional and thought provoking, but left the participants with the knowledge that they were not alone in their struggles or their joys. Family members each bring a special uniqueness and blessing to their CHARGE family member.

Christopher Sense, a 27-year-old senior at Texas Tech University, and a vocal and steadfast Red Raiders fan, spoke to attendees regarding his experiences growing up with CHARGE, including the physical and emotional challenges he has faced. Chris delighted the audience with his PowerPoint presentation, which included the accolades of many personal friends, who remarked on Chris’ tremendous contributions to the world around him. Chris reminded participants that CHARGE does not have to mean limitations, only chances to overcome.

During the various sessions, the children were entertained with games and rides in the sunny outdoors. Fishing tank, bean bag toss, fire truck, and miniature train rides were just a few of the activities provided. Volunteers worked individually with each child and made sure that all of the children, siblings and CHARGErs alike had a fun-filled time.

A full moon and cool temperatures in the evening time made the perfect setting for a Fiesta in the Pines. Spicy Mexican food, music, piñatas, and an old fashioned campfire gave the participants a chance to have fellowship and networking with other families, which made the night memorable to all whom attended.

On Sunday the board met to discuss 2010 retreat plans. With the success of this years retreat it was decided that our th Annual Texas Chargers Retreat will be held on November -7, 2010, again at the beautiful Camp Allen Center.