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Versión Español de este artículo (Spanish Version)

By Kate Moss, Family Support Specialist, TSBVI, Texas Deafblind Outreach

Parents from around the state met in Austin this past June to share their experiences and plan for continued support in helping their children who have Usher Syndrome. The group was small but the experience was powerful, as families shared their fears and their hopes for the future. The final day of the meeting these families worked to develop an action plan for activities they would like to help bring about for families of individuals with Usher Syndrome. The goals the families established for the upcoming year are listed below.

  • Development of a newsletter to send out to all the families of children with Usher Syndrome. This may be a collection of family biographies and initially be featured in editions of SEE/HEAR.
  • These biographies and the newsletter will be developed by the parents from the retreat and translated into Spanish.
  • Have a Family Retreat for the parents, siblings, extended family members and children with Usher Syndrome.
  • Offer a workshop on orientation and mobility for the parents and teachers working with students who have Usher Syndrome which includes: simulation activities, opportunities to learn about adaptive devices, and information about O&M instruction.
  • Development of a videotape for families, including parents who have recently received the diagnosis and those who are further along in coming to terms with Usher Syndrome.

Families also suggested other activities that could help promote a better understanding of Usher Syndrome and help individuals with Usher Syndrome. These included: a chatroom or electronic bulletin board, support groups for individuals (21 and older) with Usher Syndrome, presentations on Usher Syndrome at the Statewide Deaf Conference, Texas Focus, and Regional Day School Programs for the Deaf, onsite consultations, targeted mailouts and a support group for families.

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