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Summer 2000 Table of Contents
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Usher Teens and Families Come Together

By David Wiley, Transition Specialist, TSBVI, Texas Deafblind Outreach

During the statewide Symposium on Deafblindness held in Austin in February 1998, a group of parents who have teenagers or children with Usher Syndrome met and decided they would like to stay in touch with one another. Several of these families met together with Texas Deafblind Outreach later that year to plan how best to support and stay in contact with each other. They decided that they would like to have regular retreats for the entire family. The first Usher Syndrome Family Retreat was held in the summer of 1999, and was a successful and enjoyable experience for all. This year, on April 29 and 30, the second Usher Syndrome Family Retreat was held.

This Year's Retreat

Nine families met for the weekend in Austin where they heard speakers, talked to nationally recognized professionals, and had fun with one another. Texas Deafblind Outreach sponsored the event, and provided assistance with travel expenses to enable families from across the state to participate. Separate sessions were held for the young people with Usher, the parents, and the siblings. Some grandparents, and friends, and other family members were also in attendance. In addition to the breakouts for specific groups, time was planned for everyone to get together just to have fun.

The sessions for the teens with Usher were led by Harry Anderson and Jamie McNamara, and were based on the theme of leadership. Mr. Anderson is a counselor at the Florida School for the Deaf and the Blind in St. Augustine. He is also able to share his experiences as someone with Usher Syndrome, and the past president of AADB, the American Association of the Deaf-Blind. Ms. McNamara works in Shawnee Mission, Kansas as a Technical Assistance Specialist for NTAC, the National Technical Assistance Consortium on for Children and Young Adults who are Deaf-Blind. She also has the perspective of an adult with deafblindness. The teens learned about self-determination and leadership skills. They also shared their experiences and their goals. Several members of the group had met the previous year, and were able to catch up with one another. Everyone also got to make new friends.

The parents received information from Dr. Sandra Davenport, of Minneapolis, Minnesota. Dr. Davenport is one of the leading authorities on Usher Syndrome in the nation. In addition to workshop sessions, she met individually with the families to answer questions and provide in-depth information. The parents also heard from Brad Carlson, Deaf-Blind Specialist with the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) , and learned about TCB services related to college and career planning. Jeff Anderson of the Southwest Collegiate Institute for the Deaf provided information about his school.

The siblings had a chance to share feelings about their families, and have their questions  answered. Roy Martz, a social worker from Texas School for the Blind and Visually Impaired, helped guide the discussions.

In addition to these learning experiences, there was time for socializing, swimming, games, and exploring the Internet. A highlight of the weekend was a series of short skits performed by Harry Anderson and his son, Jeff, which kept everyone laughing Saturday evening after dinner. When the weekend was complete, the response of the participants was positive, and plans were made to hold future Usher Syndrome Family Retreats.

Getting a National Perspective

One outcome of this year's retreat is that a three-person team from Texas will be attending a national seminar on self-determination for teens and young adults who are deafblind. This event is co-sponsored by NTAC, and will be held in conjunction with the meeting of AADB in Columbus, OH. The team is composed of a teenager with deafblindness, a young adult mentor who is deafblind, and a professional from the state deafblind project. The young people have made a commitment to stay in contact after the workshop, and provide leadership to other young people in Texas.

Using the Internet to Stay in Contact

Another outcome is the creation of an eCircle for Usher families. An eCircle is a private web site for a group of people with a common interest. For privacy, people can only access the site by invitation. This web site is a place to post announcements, have discussions, post photographs, and have real time "chats" with other circle members, among other features. Checking the site on a regular basis is one way to stay in touch, and support one another. If you have an interest in the eCircle, contact David Wiley or Kate Moss at Texas Deafblind Outreach. (Kate katemoss@tsbvi.edu; David davidwiley@tsbvi.edu

Some teens and other family members from all over the state are also privately communicating through e-mail. Those who want a broader e-mail circle can find it through listserves that are organized across the nation. A listserve is an e-mail distribution list for people who share an interest. There is one very active listserve about Usher that is used primarily by adults with Usher Syndrome. There is another for teens with deafblindness. Information on being part of a list can be found through the DB-LINK site at www.tr.wou.edu/dblink

Conclusion

Families including teens and children with Usher Syndrome in Texas have expressed an interest in remaining in contact and supporting one another. These families are spread throughout the state, but have been gathering for retreats, and staying in touch electronically. The next get-together for the parents has been planned as a part of the statewide Symposium on Deafblindness to be held in Dallas in on February 15-17, 2001. For more information about 14 Usher Syndrome, or the family activities, contact Texas Deafblind Outreach at Texas School for the Blind and Visually Impaired. If you are interested in speaking directly to another family, several families have expressed a willingness to be contacted. For Usher Syndrome, Texas families are finding support from one another.


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