Future Reflections Fall 1995, Vol. 14 No. 3
Editor's Note: This article was written by the following group of students from the Helen Keller National Center: Myra Collins (Washington, DC); David Delgadillo (California); Matt Frawley (New York); Ginger Kinney (Oklahoma); Joey Lugo (Pennsylvania); Jean Lundgren (New York); Kathy Angstadt (New York); Shirley Rybarski (Pennsylvania) It was originally published in Usher Family Support, Fall, 1994, then reprinted in NAT-CENT NEWS,May, 1995.
The title has been altered slightly to clarify the theme and the subject of the article (it was originally called "An Open Letter to Our Parents: What We Wish You had Known."
Written by students with Usher syndrome (a condition which causes, over time, hearing and visual loss), the message of this article is, however, equally relevant to ALL parents of blind children regardless of their children's specific eye disorders or accompanying disabilities.
If you are the parent or guardian of a deaf-blind child and would like to network with other parents or want more information about deaf-blindness, you can call: 1-800-859-4111. This toll-free number is operated by Parents of Deaf-Blind Children in Partnership Committee (a committee of the National Organization of Parents of Blind Children), Sally Ruemmler, Chairman. The toll-free number is only for parents and caregivers of deaf-blind children. Professionals and parents of children who are blind only, or blind and multiply handicapped, may call (410) 659-9314 for information.
We are a group of people with Usher syndrome I and II, and one of us has retinitis pigmentosa with a different reason for hearing loss. We have weekly meetings at the Helen Keller National Center. Our group is open-ended with new students who arrive at the Center joining the group and people who have finished their rehabilitation, leaving to return to their home states. Last spring we wrote an open letter to the deaf community. In our discussions there are issues that have come up over and over, and again we have decided to put these into the form of a letter, this time an open letter to our parents.
Having Usher syndrome is both difficult and a challenge. Having vision problems that have gotten worse or can leave us blind is extremely stressful. Each of us has experienced many feelings about this. Some of our parents didn't tell us what was wrong with us. Some did say there was an eye problem but still didn't tell us the details or explain anything to us. Having Usher syndrome was kept a secret. One of us has friends whom her mother told while not telling her own daughter what was wrong; the friends were then sworn to secrecy.
Sometimes a brother or sister was told, but not us. One of us was told by her grandmother, after asking about her eyes, "Shh, don't ever discuss your eyes with your mother; it's just too upsetting," and not another word was ever said. Another group member knew she had a problem but wasn't told it was a degenerative and genetic problem until after she was married and had children. If we had questions to ask our parents, the family message seemed to be "Don't talk about your eyes."
We have discussed this many times. We have had visitors with Usher syndrome from around the country come to our group and many of them have had the same experiences. Some of us arrived at Helen Keller Center still not knowing exactly what was going on. Finding out from friends or a doctor, when we know that our parents knew this was happening to us, left us angry, frustrated, and feeling as if we have been treated like babies.
Most of us felt we knew that we had a problem sometime between the ages of 10 and 12, but there was no one to tell or talk to, even after visits to the doctors. One member of our group knew something was wrong when their mother started weeping in the doctor's office. Asking what was wrong, the member was told, "Nothing." There was no one to tell us what was going on.
All of us feel that keeping Usher syndrome a secret from us was-and is-wrong. We advise all parents to tell their children what is going on. Parents need to say that there is a problem, what it is called, that it is genetic, and that it can get progressively worse. You don't have to say, "You will become blind." That is too scary, and no one knows when or if it will happen. But it is important to us to have this information about ourselves; after all, it is our bodies and our lives. Children need to be told over and over in ways that they can understand, depending on their age.
By junior high school we had difficulties with our teachers, with our school setting, and with our classmates. Sometimes we made up excuses about why we couldn't go out at night with friends. We already knew that the problem was with seeing at night, and we were afraid to be in places where we might not be able to see. We started to be separate from our friends, and we stayed away from activities. Sometimes other students made fun of us, which was very painful and hurt us a lot. We felt very rejected in school by teachers and staff. We worried about telling our dates about our RP, hiding the information about our eyes from our friends. We were, and some of us still are, afraid that no one will marry us or love us because we might become blind.
Sometimes, although the teachers and other staff were told about our retinitis pigmentosa, they didn't seem to understand. One person in our group related being pushed around and screamed at by a gym teacher. Teachers really didn't understand the conditions under which we couldn't see and often blamed us for being clumsy, falling, or playing ball carelessly. They were impatient with us. Sometimes the lighting in school was very bad in places like the cafeteria, and we bumped into things. Then we were teased more. The staff at all the schools need to be well-trained, and trained over and over again so they know what is going on and so they understand. Someone should look at the school setting to see how they can make it brighter and safer for us.
We talked a lot about special services, when we got the services, and when we think we should have gotten the services. No group member received services before age 17. Generally those services were the beginning of orientation and mobility education with a teacher showing us how to use the long white cane. Sometimes the mobility teachers didn't know sign language, meaning that we really couldn't understand well or ask questions, and everything was limited to demonstration. This was never enough. We felt very embarrassed by the cane. At the same time, we felt it was absolutely necessary to begin to learn about it and maybe it should have started even younger.
Some parents never understood about mobility teaching and told us that they were embarrassed by our cane. They didn't want us to use it. We want you to learn about mobility, cane use, and to understand that we may use it differently in different places when it's dark or if we are in an unfamiliar place. Most of all, we need you to be comfortable, supportive, and encouraging; then we will begin to feel comfortable.
Most of us (but not all) grew up using American Sign Language. A few of us used Signed English, or were oral and learned sign late. We know many parents have some negative feelings about sign language and so never learned to sign. That is why we were sent to oral schools. We communicated at home by lip reading or writing notes back and forth. That already presented problems to comfortable communication. As our vision has gotten worse, lip reading and writing notes has become less and less comfortable. Some of us can still see enough to use visual sign, some of us rely on tracking the signing hand, and some of us use tactual sign. We now see that communication at home is worse than ever and we know that when our vision is completely gone we will no longer be able to communicate at all with our own family.
We advise all parents of deaf-blind children to learn and use sign language. We don't want to lose our families as we lose our vision.
There were other issues related to communication that could have been very helpful to us if we had been informed early on. None of us were ever told about tactual sign language, although we certainly could have used it at home, in the dorm, or on a school bus at night when we couldn't see at all. All of us learned about tactual sign here at Helen Keller. Also, no one told us about "tracking," which is holding the other person's arm at the wrist to help us to be able to see and focus on the person communicating with us. Some of us really should have learned this technique while we were still in school. It would have erased our fears to know how to track and use tactual sign even before we needed it. We all found these topics upsetting in the beginning, but we think that slow exposure might be one way to handle the situation instead of having it hit us all at once when our eyes deteriorate quickly or when we go for training.
Braille is a big issue. No one ever wants to learn it. Some of us don't even want to learn it now when we really do need it! Again, maybe it should have been introduced earlier as something routine, not by saying "You will go blind and you need to learn this." That is not the way to think about it. If we knew a bit about it we would not be so frightened by it later.
We want you to know all these things that have happened to us in the hope that other parents will read this letter and make it better for their deaf-blind children. We also want you to know that we have had a lot of feelings about what has gone on around us in the past, what is going on now, and what will happen in the future.
Having Usher syndrome has made us incredibly angry and frustrated. Some of us have been very depressed in the past, depressed enough to think about committing suicide. Some of us have tried to commit suicide when our eyes started to get worse. One or two of us still think about suicide sometimes when we think we will be completely blind. We have felt comfortable here at the Center because we have met different people with the same problem, and we feel better again. It is important for parents to know that their children have these feelings. Kids won't tell you if you don't ask. That is how we are, and it is why some of our parents never knew that we thought about suicide or even tried to kill ourselves before.
We hope that you will read this and learn a little about us. We hope that you will learn sign to have better communication at home. We want you to know we get frightened and worried. We want you to tell your children the truth soon. Young deaf people with retinitis pigmentosa need to know and deserve to know the truth so that the person and the family can plan to work together. Children and their parents need to have trust, and to have trust there must be honesty. If you are the parent of a child with Usher syndrome, tell them a little at a time until they are old enough to understand. Then tell them everything. Your children already know something is wrong. Please tell them the truth.