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Summer 2003 Table of Contents
Versión Español de este artículo (Spanish Version)

Looking for Parents: Experience Not Necessary; On the Job Training Provided by Their Child With a Visual Impairment; Bonus for a Child With Additional Disabilities

By Jean Robinson, VI Outreach Family Support Coordinator

Nothing about parenting is easy; it is the hardest, most rewarding job I know, but I could not have done it without support from other parents like myself. Would you like to meet other families raising a child with a visual impairment? Who else can you go to when you are frustrated because your child does not learn by watching others? Who else can appreciate how long it may take before your child learns to walk? Due to a variety of factors, families of children with vision loss have become isolated and don't readily have the opportunities to meet other families like themselves. In an effort to connect families raising a child with a visual impairment, including those with additional disabilities, the Texas Visually Impaired Family Network has been established on the internet. This list is designed exclusively for families of children with visual impairments that live in Texas. By connecting families within Texas, it is intended to provide them the opportunity to share their experiences, ideas, joys and concerns with each other, to gain support, information, and resources about raising a child with a visual impairment. To learn more about this list go to www.topica.com/lists/txvifamily. If you are interested in receiving and/or sending email to other Texas families of children with vision loss send a blank email to txvifamily-subscribe@topica.com.

In addition to the Network, there are a host of other organizations that provide opportunities to make connections. Following is a brief summary of some major ones.

NATIONAL ASSOCIATION FOR PARENTS OF CHILDREN WITH VISUAL IMPAIRMENTS (NAPVI) has come to Texas! History was made on June 12, 2003 during the Texas Focus conference in San Antonio when forty parents founded a statewide steering committee to form a Texas chapter of the National Association for Parents of Children with Visual Impairments (NAPVI). It was awesome watching the willingness of the parents to become involved and take on different roles. Parents from different parts of the state volunteered to coordinate the flow of information to families living in their area. These folks agreed to take on their role for one year. They can be contacted through the Texas VI Family Network. If you are a Texas parent please subscribe and offer your support to them. Spread the word and start using the latest acronym "TAPVI" which stands for Texas Association for Parents of Children with Visual Impairments!

Alison Rickerl, the Region V (Texas) Director of NAPVI, facilitated this amazing process along with Susan LaVenture, Executive Director of NAPVI. Alison lives in Houston and can be reached at 281-286-9820 and arickerl@hotmail.com. Susan can be reached at the national office at 800-562-6265 and napvi@perkins.org. For more information about NAPVI go to their website at www.napvi.org.

DEAF-BLIND MULTIHANDICAPPED ASSOCIATION OF TEXAS (DBMAT) is a statewide nonprofit support organization formed by parents and professionals in 1973. DBMAT advocates for all persons of all ages and cognitive ability who are deaf-blind multihandicapped, blind multihandicapped, deaf multihandicapped and their families. Parents serve as Regional Coordinators across the state. Plan to be a part of the next Annual Family Conference held at Camp John Marc in October 10-12, 2003. Go to www.dbmat-tx.org to find out about the In Touch newsletter and Sib Street pen pals. Bud Freeman, President, can be contacted at the Parent Connection phone number: 817-279-0366.

TEXAS PARENT TO PARENT is a nonprofit organization that was created by parents to support children with disabilities, chronic illness and other special needs and their families. Go to www.main.org/txp2pto subscribe to their newsletter, be matched to another parent, or to partner with the medical community. This organization received a four-year grant to provide training to Pediatric and Family Practice Residents and other medical professionals in order to give them a comprehensive understanding about life with a child with chronic illness or disability. Laura Warren, Executive Director can be reached at 512-458-8600 and laura-tx2p2@sbcglobal.net

FAMILY TO FAMILY NETWORK offers training and support to parents and professionals. This group received a grant to develop Connections: Creating a Positive School Culture by Uniting Families and to provide Training of Trainers across the state. Information is offered through monthly meetings in the Houston and Dallas area, a monthly newsletter, a resource library, and various trainings. For more information go to www.familytofamilynetwork.org or contact Eve Cugini at 713-466-6304 and evecugini@familytofamilynetwork.org

PARTNERS RESOURCE NETWORK was the Parent Training and Information Center (PTI) for Texas from 1986-2002. Under the latest federal grant process Texas has been divided into 3 different grant regions each with its own Parent Training & Information Project (PTI). Partners Resource Network (PRN) received two of the grants and is the nonprofit agency that coordinates and funds two of the Parent Training & Information (PTI) projects. The purpose of both projects remains the same: to empower parents of children and youth with disabilities in their roles as parents, decision makers, and advocates for their children. Partners' goal is to promote partnerships throughout the state and the regions it serves, among parents and professionals, parent organizations, school districts, and service organizations. Parents and professionals are encouraged to work together as PARTNERS and to focus on cooperation and collaboration. PATH Project East serves Educational Service Center Regions 5-13. PATH Project East Director, Janice Meyer may be contacted at the Coordinating Office in Beaumont at 409-898-4684. West Texas Parent Education Network (PEN) serves ESC Regions 14-19. Mary Lou Wright, W. TX PEN Project Director works in Lubbock and may be contacted at partnerspen@earthlink.net and 806-762-1434. Go to www.partnerstx.org to find out about local events and the regional director in your area or call 800-866-4726.

TEXAS FIESTA EDUCATIVA, a nonprofit organization, received the third grant for a Parent Training & Information (PTI) and serves ESC Regions 1,2,3,4,20. Its mission is to advocate for and to provide multilingual/multicultural education services to persons with disabilities, their families and the professionals who serve them. Services are provided through an annual statewide multilingual/multicultural conference scheduled each August in San Antonio. This conference links children with disabilities and their families to community professionals to improve access to health and human services, education, and vocational rehabilitation programs. Two offices are funded to serve parents of children with disabilities, youth with disabilities, and service providers. Resources include a newsletter, a lending library, and scheduled trainings. Project P.O.D.E.R. is located in San Antonio and their contact numbers are 800-682-9747 and 210-222-2637. El Valle Community Parent Resource Center is located in Weslaco. Their contact numbers are 800-682-0255 and 956-969-3611. For more information go to www.tfepoder.org.

PROJECT SPARKLE is a new model of individualized learning that enhances the ability of parents of children who are deafblind to fulfill their critical and expanded role in the development and education of their children. Many parents of children who are deafblind currently access information and training through workshops, conferences, and parent retreats. Through Project SPARKLE, parents have access to information, training, and resources in their homes via the Internet. The project is funded as a model demonstration grant and is currently working with about 60 families in the states of Texas, Georgia, Minnesota, and Utah. Depending on the Texas Deafblind Project funding, TSBVI Outreach is hoping to include more Texas families to the project next year. To learn more about Project SPARKLE, check out the website at www.sparkle.usu.edu/about. If you are interested in participating in the project, contact Edgenie Bellah, Deafblind Family Specialist, at (512) 206-9423 or edgeniebellah@tsbvi.edu.

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Last Revision: August 19, 2004