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from Sumer 1997 issue

A Daring Adventure

by Kris Cué, Austin, TX

Helen Keller once said, "Life is a daring adventure or it is nothing." In August 1994, I discovered I was legally blind as a result of the natural progression of retinitis pigmentosa (RP). I have since learned this is part of a bigger picture known as Ushers Syndrome, which is a genetic disorder involving RP and hearing loss.

My personal feelings that emerged after this discovery were overwhelming. I was totally clueless as to what to do or who to talk to about this. At the advice and strong encouragement of my dear sister-in-law, Julia Cué, I very reluctantly contacted the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) , where she had worked. Julia felt this contact would provide the support and assistance I desperately needed both at home and at work.

This led to my initial contact with Randy Feille, Supervisor of Deaf-Blind Services at the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) . After services had begun, Randy and I got together with a couple of other individuals with Ushers to discuss the possibility of beginning an Ushers Syndrome Support Group in Austin. The idea to begin a group came largely from four Statewide Ushers Syndrome Conferences and encouragement from individuals like Dorothy Stiefel, Executive Director of the Texas Association for Retinitis Pigmentosa (TARP).

Since this early meeting, the group, with much help from Deaf-Blind Specialist Jack Earwood, became known as US TOO! (because it is predominately comprised of individuals with Usher Syndrome Type II). Monthly meetings have consisted of guest speakers such as Psychologist Linda Eldridge and Psychotherapist Beth Dennis, both of whom spoke on relationships, and Rehabilitation Teacher Pam Scott who spoke about "living in a sighted world." Potlucks and ordering pizza have also made their way onto our agendas!

Future endeavors include a group scrapbook, more pizza, and a summertime social scheduled for June 27th in conjunction with Helen Keller's birthday. In tandem with this, information on available services, adaptive equipment, Deafblind culture, and public awareness will be shared at future meetings.

We are hoping to expand our horizons by helping other cities to begin support groups. Already, a support group has begun in San Antonio and plans are being made for a support group in Houston. We are open to new members and new ideas. If you would like more information about any of these groups, please contact me through Randy Feille's office at (512) 459-2575.

Editor's Note: Kris Cué was born and raised in Austin. Though she was diagnosed with a hearing impairment at the age of 4, it was only in her third year of college that she learned she had Ushers Syndrome (Type II). However, this did not stop her from completing a degree in Deaf Education, although she later made the decision not to teach.

Kris worked for seventeen years at Texas Rehabilitation Commission as a Disability Examiner for SSI. When it became difficult for her to keep up with the volume of reading required by this job, she left TRC. After looking at other work and experiencing doors being closed to her, she was feeling that her options had disappeared. Ironically, her sister-in-law invited her to a Tupperware party hosted by a women who was blind. As Kris put it, "I figured if she could do it so could I." So Kris is currently a Tupperware and Partylite Consultant.

I asked Kris how her parents felt when they learned about her having Ushers Syndrome. Even though Kris was much older and quite independent, it was still devastating news to her Mom. (Her Dad had passed away before she was diagnosed.) Kris says her mom still worries about her ability to handle things on her own. Kris' advise to parents of children with Ushers Syndrome is to get support early on for yourselves and your child.

Kris is very willing to be a resource to parents or individuals who are dealing with Usher Syndrome. You may contact her by phone at 251-2550 (voice).

You may also be interested in these Websites if you are an Internet user:

D-B Link - http://tr.wosc.osshe.edu/DBLINK/
A Deafblindness Web Resource - http://www.deafblind.co.uk/

You might also enjoy getting on these listservs. There are many interesting people to meet out there in cyberspace:

Ushers Syndrome Mailing List - majordomo@farside.cc.misu.nodak.edu
Deaf-Blind Mailing List - listserv@tr.wou.edu

This technology offers an additional avenue of support to individuals with Ushers Syndrome and their families both in terms of information about the syndrome and connections with others who are dealing with these unique issues.


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