Fall 2007 Table of Contents
Versión Español de este artículo (Spanish Version)

Finding a Tele-Support Group

By Michele Chauvin, Parent, Sugar Land, TX

Abstract: The Jewish Guild for the Blind sponsors tele-support groups for parents of children with visual impairments. They are open-ended, informative and supportive discussions of issues and topics of concern for parents raising children with visual impairments. These groups are composed of parents with children who have the same eye conditions. They are professionally facilitated and are offered at no cost to parents. They meet by phone on a weekly basis. A mother shares how participation in this group helps her to find answers to unique questions about raising a child with retinopathy of prematurity.

Keywords: parent support group, blind, visual impairment, retinopathy of prematurity

Our daughter, Lauren, arrived by emergency C-section at 26 weeks, weighing only 1 lb. 2 oz. She spent 5 months in the NICU (neonatal intensive care unit) and received supplemental oxygen. During that time, Lauren developed ROP (retinopathy of prematurity). Although she had several eye surgeries, Lauren lost her vision completely because her retinas formed scar tissue and detached from her optic nerves. As first time parents, we brought our baby girl home uncertain of her future. The next few months felt like a whirlwind, as we visited numerous doctors, therapists and specialists. Lauren also received Early Childhood Intervention services. Eventually she attended PPCD (Preschool Program for Children with Disabilities) for several years at a public school near our home. This fall she will go to an inclusive public Kindergarten class. Over the years, raising a child who is blind, mobile and will be a Braille reader has posed many challenges.

In the past, we participated in several BVI (blind & visually impaired) events and groups to gain more insight into Lauren’s world. We greatly valued this time with other BVI families. Recently we heard that the Jewish Guild for the Blind (JGB) provides parent tele-support groups for BVI families. In the spring of 2006, I joined a JGB support group for parents of children with ROP. Through this group I met other parents across the US with children who are blind and who were also premature, like Lauren. Although we live near a large city, we had yet to meet other families with a child who is totally blind due to ROP. We had met other children who were visually impaired due to ROP, as well as others who were functionally blind due to different eye diseases. So this was the first time to truly connect with other families sharing similar challenges we thought were unique to us.

Even after attending numerous workshops, conferences, and local and state parent meetings, we still did not have the answers to some of our questions. Topics that seemed simple to parents of sighted children often confused us. By connecting with this support group, we are learning there are other families experiencing similar issues and celebrating similar milestones. When will my child zip by herself? Will dental visits ever go smoothly? What toys will interest her? How do we teach her to make her own meals, dress herself, or brush her teeth? Now we have a wonderful resource for information and encouragement specific to our concerns.

The ROP parent group has weekly phone discussions, which are professionally facilitated and free. I enjoy the convenience of visiting with other families by phone from home, as traveling to meetings is not always possible. We also have frequent guest speakers join the discussion, and I appreciate the opportunity to consult with numerous professionals who work specifically with BVI populations. So far we have talked with an APE (adaptive physical education) teacher, an O&M (orientation & mobility) specialist, a director of a school for BVI, an OT (occupational therapist), a speech therapist, a BVI college graduate and more.

In a nutshell, the JGB parent tele-support group for ROP has been a huge blessing in regard to raising our daughter who is blind. This weekly dialogue and consultation session provides us an open format for questions and answers, with new insights gained weekly through sharing and listening to others who have similar situations and challenges. What a comfort to know we are not alone. Thank you to our facilitator, Susan Barron, and to the Jewish Guild for the Blind for providing this invaluable service.

For additional information, you can visit <www.jgb.org/programs-parent-tele.asp>.

To request additional information, or to make a referral, please contact: Daniel Callahan by phone: 212-769-7815 or e-mail: <parent-groups @ jgb.org>.

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Last Revision: December 11, 2007