Future Reflections Winter 1994, Vol. 13 No. 1
MEETING THE NEEDS OF THE DEAF-BLIND CHILD
[PICTURE] Kaylee, exhausted after a full day of running and exploring, falls asleep in mom’s arms at the Texas Barbeque Under the Stars
"At first everything looked real bleak for us. We cried a lot the first few years. But our child is now thirteen and she's absolutely wonderful!"
Those who met Keri-Ann Ruemmler at the 1993 NFB National Convention couldn't help but agree with this statement by her mom. Keri-Ann is a delightful young teenager. Her engaging smile, lively curiosity, and pleasing personality captivated everyone who crossed her path at the 1993 NFB National Convention, which she attended with her mother, Sally Ruemmler of Kansas. Deaf-blindness was certainly no deterrent to Keri-Ann in making friends and generally having a great time at the convention.
But it was no easy journey for the Ruemmlers to go from a bleak to a wonderful outlook for their daughter. It required attitude adjustment, information, courage, persistence, some very specific training strategies, alternative techniques in communications and mobility, and support from the National Federation of the Blind.
Sally Ruemmler shared some of her experiences with other parents at the NFB Convention through the panel discussion "Meeting the Needs of the Deaf-blind Child." This panel was one of the items on the agenda of the all-day Parents Seminar. Sally shared the podium with Kathy Arthurs, the mother of a three-year-old deaf-blind and multiply-handicapped daughter; Kathleen Spear; and Don Pettyþboth of whom are deaf-blind adults who grew up as deaf-blind children. Julie Hunter, president of the NFB Parents Division in Colorado and chairman of the Concerns of Parents of Deaf-Blind Children Committee, moderated the panel discussion. Julie began the discussion by giving a little bit of background on deaf-blindness. She pointed out that most of us think immediately of Helen Keller when we think about deaf-blindness. But this image is inaccurate. Helen Keller, Julie explained, is representative of only one of four general categories of deaf-blindness. The four categories, according to Julie, are based upon when the individual became deaf, and when he or she became blind. Helen Keller represents the category made up of those who are born both deaf and blind or who lose both vision and hearing very early in life, before the development of language. Another category is made up of those who are born deaf (or, again, become deaf very early in life), then later lose their vision. Ushers Syndrome is a common medical condition among persons in this category. Sally Ruemmler's daughter, Keri-Ann, fit into this category. Then there are those who are blind from early childhood and only later in life (after the development of language) lose a significant amount of hearing. Julie explained that her teenage daughter, Lauren, fell into this category. The fourth category consists of adults who became deaf and blind through disease or injury. These individuals had learned language and developed life skills as seeing and hearing children.
Julie Hunter explained that the significance of these categories lies in the manner in which the children who are deaf-blind have historically received services. What has happened, and still happens, is that children who are primarily deaf have their special education programs planned by educators of the deaf, and children who are primarily blind have their programs initiated and conducted by educators of the blind and visually impaired. This was the pattern of education, for example, for both Lauren Hunter and Keri-Ann Ruemmler. Keri-Ann, being first and primarily deaf, for many years received services from only the deaf program. Lauren, who was blind many years before she began to lose her hearing, had her special education planned by the teachers of the visually impaired. As a consequence, the programs for these children are often inadequate. Sally Ruemmler, in her presentation, explained that it wasn't until her daughter attended a program for the blind at the Kansas School for the Visually Handicapped, that they understood the nature of Keri-Ann's vision loss. It turned out that she has tunnel vision, which affects her mobility (she couldn't see to the side or straight down without turning her head). This explained why she frequently fell and bumped into things and why she had trouble with interpreters who signed so broadly that much of it was outside her field of vision.
As troublesome as it was for the Ruemmlers to piece together a program for their daughter, parents of congenitally deaf-blind children have far more difficulties in finding suitable programs for their children. Mrs. Hunter pointed out that very little has been available to these children, in spite of what was learned from Helen Keller and her teacher Anne Sullivan regarding the need for intensive total-waking-hour intervention. The lack of an appropriate education for these children, Julie explained, has often led to a misdiagnosis of mental retardation. This problem highlights the need, Julie Hunter explained, for public recognition of the special character of deaf-blindness as a unique disability distinct from both deafness and blindness.
This basic information set the stage for the four panel speakers. The first speaker was Kathleen Spear, a congenitally deaf-blind mother, grandmother, and college graduate. Kathleen addressed the crowd in her own voice without an interpreter. Kathleen explained that her parents knew that she was blind by the time she was six months old. At first, they feared she was also brain-damaged. Although all but one doctor advised her parents to put her in an institution, she was raised at home with her six brothers and sisters. When she was four, her parents were told that there was no evidence of brain damage but that she was deaf. This was devastating to her parents. "Until the day my father died," Kathleen said, "he could not say the word deaf-blind." Nevertheless, her parents demonstrated considerable insight and good sense in raising her in those early years. "My dad was an immigrant, my mother the child of immigrants. Neither had any experience with disabilities. [But] my first speech therapist, believe it or not, was my dad, who had the equivalent of a sixth-grade education. He would sit with me by the window in his armchair after going through the comics with my brothers. Putting his hand under my chin, he would point to his pipe and say, `What is this?' Then he would say, `Who am I?' He would give me the answers-pipe and dad-and I would try to emulate him. I didn't do a very good job then. The only people who could really understand me were my parents. But it was the beginning of the idea of language for me."
The frustrations she must have experienced in learning to communicate as a small child were poignantly expressed in her description of going to Mass on Sunday. "As a little girl the thing I looked forward to all week was going to church. In church I could sit for an hour and watch the glow of the candles (I had some residual vision in my right eye then) and smell the incense. And for one solid hour nobody pulled me or pushed me or tried to make me understand."
Even as a toddler, Kathleen had an independent spirit. "I was a tenement kid. I learned independence by roaming the neighborhood by myself. Years later my father would say that I was the only four-year-old on the block with a police record because sometimes the cops had to go and find me and bring me home."
Education consisted of a series of five different schools before she entered an apartment for the deaf-blind at the age of eleven. By then, however, Kathleen explained, she had learned Braille. "A blind person can talk about Braille as an alternative technique, but to me it is not an alternative technique. It is salvation. I read Braille faster than most people read print. I went through college using Braille."
Of her college experience, Kathleen said, "I didn't graduate summa cum laude, but I did graduate in four years with a B average. I can tell you I didn't sleep much during those four years."
It was while she was in college that Kathleen learned to use a cane. "I had not learned to use a cane because the deaf-blind weren't supposed to be able to do this. But while I was in Manhattan attending Hunter's College I taught myself to use the cane and went about the city with it."
Of all the successes in her life Kathleen stated that she most valued the fact that she had been a successful parent. As a child she never believed she would ever marry or have a child, but she did. Tragically, however, she was widowed when her son was nine years old. She raised her son, who is now 30 years old and a lieutenant in the United States Navy, as a single parent. Kathleen ended her presentation with a poem she had written about Helen Keller. In one line of the poem, Kathleen refers to the message of Helen Keller's life. But she could just as well have been referring to her own life. Here is the line: "The message that she left to us who are both deaf and blind is symbolized in hope that life need not leave us behind. If people would accept us, life wouldn't be so hard. For we possess potential; who knows how much save God."
Don Petty was our next speaker. When Julie Hunter introduced him and his wife, Marilyn, (who was interpreting for him), she explained that Don and his parents, Bob and Charlene Petty, had written a book called Out of the Shadows. The book described their difficulties in getting education and services for Don when he was a child.
Don explained that his speech would be given by reverse interpretation. He would speak first, then his wife would repeat his speech for the audience. Don's disability came about because of a bout of encephalitis he had as a baby. The loss of vision came first. He learned Braille in the third grade, but he could understand speech until about the eighth grade. By age eighteen he was learning to sign.
Don especially emphasized the importance of his parents in his life. At one point, as a young adult, he was doing nothing but sitting at home, depressed about his life. His father came into his room where he was sitting in front of the t.v. and asked him, "Do you want to spend your life in front of the television?" Don decided that this was not what he wanted to do with his life. Today, he is married and has a job. After his brief presentation Don invited everyone to come and speak with him, his wife, and his parents at the exhibit hall where they had copies of his book for sale.
Our first two panelists were living proof of the ability of deaf-blind children to grow up and become happy, productive adults. They were representative of what can be if parents dare to dream and expect the most from their child.
But we all know that dreams are not achieved without hard work and persistence. Our next panelist, parent Kathy Arthurs, described the nitty-gritty reality of life with a deaf-blind infant and toddler. Here is the edited text of her remarks:
My name is Kathy Arthurs. I have two children. Kristin is eight, and Kaylee is three and a half. Kaylee is here with me at the convention. She is a spunky three-year-old. You'll hear me calling her as she runs and runs down the hallway. Kaylee was born blind deaf. She was born with a cleft-lip palate. She has epilepsy. It's a depressing thing to hear the doctors tell you that your child will never see well, hear well, speak well, or even develop cognitive skills-that she'll never do much of anything. Naturally, I went home depressed. My husband didn't know what to do with me. But I thought about it, and I came to the conclusion early on that the only person who should put limitations on my daughter was my daughter. I decided I had to be positive. I know that's been said a lot today, but it is so true. You have to be positive. You have to be positive, and you have to understand what your child needs.
For example, I decided that Kaylee needed to know when I was around, even when I wasn't touching her. So, from the time she was a small infant I wore the same perfume so that no matter where I was, she could smell me. It just seemed like common sense to me that Kaylee needed to learn to use her hands to explore things around her. So I wore interesting jewelry and interesting clothing. I painted t-shirts with fabric paint. I sewed appliques on my clothing and on hers. I did anything I could so she couldn't avoid touching different textures from the very earliest age. I had a rule when she was an infant: If you wanted to admire my baby, you held my baby. This way she could see your glasses, your beard-God help you if you had false teeth!
When she was a little older, we needed to find a way to get her interested in moving about. Kaylee does have light perception, so for stimulation we used a small flashlight. We used it to help her pick up her head and to motivate her to move across the floor. My husband would push on her feet, and I would use the light in front of her. We strung Christmas lights from toy, to toy, to toy. This really motivated her and got her moving. Then I put my Christmas lights around my child's room so she could see the perimeter of the room. This has made for an interesting childhood, let me tell you. She thinks Christmas is year-round.
Dealing with food was terrible! She was scared to death of touching her food. So I devised a method of putting plastic wrap across the food so she could feel the food through the wrap. This way she could discover a lot of things about the food-shape, temperature, hard, soft, thin, thick, even bumpy or smooth-without actually getting her hands on its surface. And little by little I pulled back the wrap so that, with a lot of encouragement from me, she began to feel the unwrapped part. We still have some trouble with gooey stuff, but for the most part she is feeling everything now.
Very early on I Brailled all of her children's books with clear contact paper and a slate and stylus. I didn't know Braille well, so I found a Braille chart-a cheat sheet-and used that to help me.
When Kaylee started to cruise around and walk on her own at eighteen months, I gave her a cane. I had three rules: she had to hold onto it, she had to hold it in front of her, and she had to keep the point down. I confess my shins were definitely raw for the first six months or so after she got her cane, but she finally got the idea. Now she has confidence and independence. The cane is an extension of herself. She doesn't leave home without it. We keep it in the same place by the door so when we go someplace she always knows where it is.
When she runs into something she hasn't seen before, I take the time to let her feel that object. We spent an hour at last year's convention on a grate on the sidewalk in downtown Charlotte.
Parents, please, I urge you, get your child a cane. If it doesn't work at first, put it up for a while and give it to them later. Education and IEP's-what a nightmare it was at first! My school system said "We've never had a deaf-blind child in our preschool classroom," and I said that's okay, Kaylee's going to be the first. I stood my ground and the school system, when they realized they couldn't push me around or make me change my belief in Kaylee, backed down. From that experience I learned that parents have power. This is my advice to parents: Get yourself educated. Know the rules. Stand your ground.
Kaylee is now in preschool. Regular, ordinary, toddlers-running-everywhere preschool. For support she has me and an interpreter in the classroom in addition to the regular preschool teacher. And all the children in there love her. She has taught them as much as they have taught her. With the right support, why not regular preschool for the deaf-blind child?
Everybody asks me how I deal with Kaylee's disabilities, how do I raise her? The answer is simple. Mostly it's just like raising any other three-year-old. We go places together as other families do: to church, to the YMCA, to the park, to the mall, wherever. I don't tell Kaylee she can't do something. I've always said she can try. Yes, she can play with other kids in school, the neighborhood, or at church. Yes, she can ride her tricycle-even if it means crashing into a few things. And Kaylee has rules and regulations to follow just like other kids her age. She has to pick up her own toys. She has a regular bedtime. She has chores. For example, she takes the clothes out of the dryer and puts them in a clothes basket. She puts the silverware in the drawer. (Mind you, it doesn't always get in the right place, but it gets in the drawer.) I always remember that Kaylee is first and foremost a child like any other child. Yes, she is deaf-blind, but that comes second. First, she is a child.
In our three-year journey with Kay, I have discovered that I can still have the same dreams for her that I had before she was born, before we knew about her physical disabilities. I expect her...[emotionally overcome and cannot speak for awhile, applause] I'm sorry. I expect her to get a higher education. I expect her to have a career, to marry, to have children, and to aid her community. And if you see my little toddler at this convention, please say hello to her-that is, if you can catch up to her as she's running through the hallways. [applause] Thank you.
Sally Ruemmler, who was introduced at the beginning of this article as the mother of deaf-blind teenager, Keri-Ann, concluded the panel with her remarks. Unlike the other panelists, Keri-Ann was deaf first. The gradual loss of peripheral vision did more than create a mobility problem for her. Because of her blindness, she began to lose friends and was rejected by many in the deaf community. Interpreters at the public school she attended did not understand why they needed to modify their signing for her. (Interpreters, Sally explained, tend to sign widely and Keri-Ann, because of the loss of her side vision, could only see signs if they were kept within the very narrow range of her central vision.)
Finally, with the help of their new friends in the Federation, Keri-Ann got a cane and some mobility training. Her parents enrolled her in a private residential oral school where her specific communication needs were accepted and understood. Although many parents are understandably reluctant to send their child away from home to school, Sally said that for Keri-Ann this move "was absolutely the beginning of independence for her." "I am," Sally explained "the original overprotective mother. Now my child flies home every other weekend by herself. She is quite independent." To further increase that independence Keri-Ann, her mother explained, had enrolled in a summer program for youth at the National Federation of the Blind's Colorado Center for the Blind. She would be attending that program after the NFB Convention. "She is very excited [about going]," Sally said. "She is going to come back more independent than she left, I'm positive."
Sally concluded her remarks with a declaration of her commitment and gratitude to the organization-the National Federation of the Blind-which truly changed what it means to be deaf-blind for Keri-Ann and her family. She also invited everyone to take a moment at the convention to stop and talk with her daughter. "She's quite a character," Sally proudly boasted. "You will be in for a treat."
It was obvious from the audience's warm, enthusiastic response to this panel that one did not need to be the parent of a deaf-blind child to draw inspiration and increased understanding from the deaf-blind and their parents who have become an important part of this movement.