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(Originally published in Spring 2005 SEE/HEAR Newsletter)

By Edgenie Bellah, Family Support, Texas Deafblind Project

Abstract: Find out about the first class of the Deafblind Family Leadership Series and how they are putting their learning into practice by being top-notch leaders within their communities.

Keywords: Family, blind, deafblind, leadership, training

Turning “Me” to “We.” Although Dee Dee Elberle, Grant Project Coordinator with The Arc of Texas, originally shared this phrase as a definition for advocacy, twelve parents from around Texas have adopted it as their unofficial motto for the yearlong adventure they are taking together as members of the first Deafblind Family Leadership Series. Sponsored by the Texas Deafblind Project, the new series assists family members to hone their leadership and mentoring skills so that they can have a strong voice in the decisions being made about services and supports for their children with deafblindness.

From the moment the Class of 2005 roster was finalized, they began setting themselves apart from traditional training participants. The small class of twelve represents the diversity of Texas and the parents have already demonstrated an interest in making an impact on services and supports for children with deafblindness in their local communities as well as statewide. Nominated for the class by professionals in the fields of education and rehabilitation, and officers from DBMAT and TAPVI, each participant made a wholehearted commitment to participate in three trainings in Austin, complete Project SPARKLE, participate in a variety of distant education activities, and do three follow-up projects.

Group photo of Texas family leaders: Front Row (left to right): Denise Sewell, BJ Bond, Michelle Goodwin. 2nd row: Wayne Thompson, Alicia Porras. 3rd row: Teresa Dafft, Mira Lopez, LaChandra Noel, Alaine Hinds, Yolanda Scarlett, Edgenie Bellah. Back Row: Jennifer Holweger, Lisa Wick.

Front Row (left to right): Denise Sewell (Gilmer), BJ Bond (Wylie), Michelle Goodwin (Ft. Worth). 2nd row: Wayne Thompson (Sweetwater), Alicia Porras (El Paso). 3rd row: Teresa Dafft (The Woodlands), Mira Lopez (Copperas Cove), LaChandra Noel (Houston), Alaine Hinds (La Porte), Yolanda Scarlett (Coppell), Edgenie Bellah (TSBVI). Back Row: Jennifer Holweger (Pflugerville), Lisa Wick (Burkburnett).

The class came together for the first time in October. The weekend was spent studying the basics of deafblindness. Building on what they learned through Project SPARKLE, participants received training from the Texas Deafblind Project staff to broaden their understanding of deafblind issues beyond what they already knew about their own child. After the training, each of the parents completed a small follow-up assignment that demonstrated their understanding of deafblindness. Follow-up projects for the class included giving presentations to parents and teachers, writing articles, working with the media to increase awareness, and parent mentoring. Although the intent of the projects was to illustrate their knowledge, the actual outcome was a powerful demonstration of the talents of these parents!

Everyone came back together the first weekend of December to focus on understanding the community, educational, legislative, state agency and medical systems, and how to provide advocacy and leadership within each system. The follow-up assignments were designed to demonstrate the participant’s leadership skills. Again, the high caliber of the class came through clearly. Emerging from the class were projects such as serving on state level workgroups, serving as editor for a special education booklet for a local school district and presenting at a family conference.

Becoming effective mentors will be the focus of the training session in late April. The best support a family receives sometimes comes from other families who have also “been there,” and as leaders in their communities, class participants have already stepped up to the plate and offered this invaluable support to other families. Because this is the last training in the Deafblind Family Leadership Series, the follow-up assignment will combine all the training into a systems-change project. Again, showing their dedication to the deafblind community, several participants have already started their projects.

To accommodate the participants’ busy lives while attempting to quench their continued thirst for knowledge, the training includes some distance education activities. Beginning in the fall, the class began learning more about the Special Education process by reviewing several documents and articles and going through a guided book study. Through group email discussions and a couple of telephone conference calls, everyone will have an opportunity to discuss what TEA, Advocacy Inc., and The Arc of Texas have to say about being an effective advocate for children with disabilities. Using a similar format, the class will study active learning and Orientation and Mobility more in-depth for students who are deafblind multiply disabled.

And if all this weren't enough learning to jam into one year together, the class has yet another project to complete in order to graduate. To pull everything together, each participant will be completing the Parent Portfolio Notebook: Turning Life Experience into Credentials workbook, a tool developed by the Family Resource Center Network of Los Angeles County. This workbook will help participants take those incredible life experiences they have had caring for their loved ones with deafblindness and turn them into credentials that open doors to leadership opportunities.

Balancing family responsibilities and leadership activities can often be hard. However, maintaining that balance is essential in order to be an effective leader and to avoid burnout. Throughout the training, participants receive information and support through telephone conference calls, group email discussions, being mentors with each other, and individual consultations to develop strategies that will help them proactively take care of their personal needs while also being leaders. This strand is affectionately called “Taking Care of Ourselves.” This aspect of the training is used to remind ourselves of the importance of bringing joy into our own lives as well as the power of “we.”

I anticipated being the energy and planner behind the training, but this class clearly stepped up to the task of designing their own learning opportunities. We’ve experienced several unanticipated outcomes of the training. The class quickly came together as a cohesive, effective group that is building upon each person’s skills and talents. The degree of mentoring and resource sharing has flowed well beyond the twelve parents to benefit families across the state. The follow-up projects far exceeded any expectations we had when we wrote this activity into our state’s deafblind project grant.