Future Reflections Summer 1996, Vol. 15 No. 3
Editor's Note: Several members of the National Organization of Parents of Blind Children (NOPBC-a division of the NFB) attended a four day international conference on deaf-blindness last spring in Vancouver, British Columbia, Canada. Entitled "Living and Learning: A Lifelong Adventure" the conference was attended by 460 participants from sixteen countries. Sally Ruemmler, Dawn Salka, Dianne Hemphill, and Vicki Vermillion all agreed it was a worthwhile conference. Here are some of their impressions and observations of the conference:
I attended many sessions that I am sure will be very useful to draw upon for future reference. But, I must say, the most important thing that happened was meeting and talking to the parents. I talked to them throughout my stay and have contacted many of them since I have returned home. It is just so heartbreaking to continue to meet people whose children slide between the cracks of educational and social opportunities, and you know I am committed to change what I can in that area. I want parents of deaf-blind children to understand how important it is to take a lead in their children's destinies and know what resources are out there that will really benefit them. They need, of course, to begin with the National Federation of the Blind. --Sally Ruemmler, Parent, Kansas
We met with parents before, between, and after sessions into the wee hours. There was so much to learn and share we didn't want to go to sleep. Box lunches were served all four days so people could network and not spend time trying to get back and forth to the conference center.
I really liked what I saw when everyone that needed one had an interpreter or intervenor. It was made sure that everyone's hearing aids were working well-"Am I coming in clear?" If there were problems, adjustments were made.
I attended the sessions summarized below:
The Children's Discovery Project: A Comprehensive Model Serving Children Who are Deaf-Blind and Their Families: This is an organization based in Minneapolis, Minnesota, that provides intervenor services to deaf-blind children and their families. The director, Sally Prouty and the intervenor coordinator, Susan Smith made the one and one-half hour presentation. A videotape was shown of the kids (toddlers to teen-agers) on activities they participated in with their intervenors in the community (i.e. hayride and pumpkin carving).
Calendar System: An Innovative Approach: Jackie Kimmel, an intervenor from Canada, focused on a communication system that she designed in the form of a calendar. Not only does it promote communication among non-verbal children, but also assists deaf-blind children in knowing what happens next, and what to expect during the day.
The Impact of Having a Deaf-Blind Child in the Family: This was a two-hour presentation by Marilyn Minkin, a Certified Marriage & Family Therapist and Mental Health Counselor. There was audience involvement. We discussed our feelings and were assured that we are not alone. A twenty-five-year-old woman had a fifteen-year-old deaf-blind sister, and she recounted her experiences growing up. The session brought out a lot of emotions and was a real tear-jerker.
Home Based Family Centered Intervenor Services for Children Who Are Deaf-Blind: Birth to Five: Linda Hisop and Shannon Williams from Ski-Hi Institute in Utah gave this all-day presentation. Thomas Clarke was also present and has worked with the deaf and deaf-blind for almost thirty years. The daily role of the intervenor was described. Through videotapes and hands-on activities we were provided with training in observing and enhancing communication in children who are deaf-blind. Tactile communication was discussed and an overview video was shown on some of the new videos that are available through this institute.
It was a very successful and productive conference. I only wish there was more time to be with everyone. We invited many parents to come to California to the NFB Convention in July.
--Dawn Salka, Parent, New York
It was very fortunate, I believe, that we were able to extend hope and information to many parents who were at the conference desperately seeking help. A number of these parents met with us after conference hours to discuss their particular issues. I know that the philosophy behind the NFB is what makes all the difference in the quality of life of one who is blind, and I know it can do the same for deaf-blind persons.
We certainly brought to everyone's attention the importance of addressing the blindness issues early on, and possibly sparked some "eye-openers" in that area. Deaf-blindness is more than just the deafness and more than just the blindness, which seems to be making the whole direction of intervention the most controversial. By neglecting the blindness aspect, we noted time and time again deaf-blind persons (with interpreters and some useful vision) tripping down stairs and running into objects and people. Though they had some useful vision, they were ignoring the fact that they could be traveling more safely and independently simply by putting a cane in their hands. I hope, if nothing else, I put the idea across that the white cane is useful for independent traveling and makes those stairs, steps, people, and changing environments simple and safe.
--Dianne Hemphill, Grandmother, Kansas
Editor's Note: Dianne is blind and uses a white cane everywhere she travels. She is a rehabilitation counselor by profession, and the grandmother of a deaf-blind child.