A MOTHER OF BLIND CHILDREN ADDRESSES THE PROFESSIONALS by Barbara Rooney In the February, 1990, issue of the Braille Monitor, we reprinted Dr. Jernigan's remarks to the conference of the PenDel Chapter of the Association for Education and Rehabilitation of the Blind and Visually Impaired, which took place on November 17, 1989. Following his remarks that day was a talk by a truly remarkable woman, Barbara Rooney, a member of the Lancaster County Chapter of the National Federation of the Blind of Pennsylvania. She and her husband have twelve children, eleven of whom are adopted. The twelfth is a foster child. Four of the youngsters are blind and four have Down's Syndrome. Nine of the children are disabled in some way. The Rooneys have had eighteen years of experience dealing with professionals in the education, social service, and medical fields. As a consumer of services her assignment for this speech, according to the speaker who introduced her, was to tell her audience where the problems are in the system and what, from her perspective, is going wrong. Here is what she had to say: After listening a little bit this morning, I think that the most important thing I have to share with you is that blindness is okay. I mean that, deep down, it is an okay way to be. And the sooner those working with families who have children born blind or have become blind begin to shift their emphasis to feeling okay and to having positive attitudes about these people, the better a world we are going to have. Through the years my husband and I have had some really difficult times in relating to our family. You should know that we are an adoptive family. That is important only in that we received our children on a basis of joy and fulfillment. Therefore, their blindness was not a problem for us. A majority of families that you will work with, I am sure, have a different perspective. Most have been shocked and have had to learn to adapt and overcome a great sadness. But despite a lot of improvement over eighteen years, the system still allows parents to grieve inwardly while carrying the burden with head held high instead of giving them permission to get on with their lives and feel good about having produced a blind child. That is the basic problem in society. Oftentimes we see professionals running about, trying to fix it and make these children okay. Well, if making it okay means you have to make them sighted, then we have a real problem. In order for integration to take place successfully in a community, it has to take place first in the home. Although the majority of you here work in rehabilitation of the blind young adult, I have to say that there is just not enough emphasis on early intervention. When we as a society begin looking at children who are born a little different as people who are okay, people we can learn from, and when we help the family to reach that feeling, successful integration will take place. A lot of our arguments will cease, and we will have respect for one another. No two parents or children are alike. Hence the needs of any two families cannot be identical. The history of each, their dreams, their financial situation, and their expectations for their children are unique. When a child is born blind, there is a disruption in the nurturing system. This occurs because the parents are often in shock and pain. Their dreams of a normal child--I have never met a normal person, so I'm not sure I know what that means--are shattered. They are in pain. And what those of us who say we care need to do is to allow these families to express their anger, their anxiety, their guilt, and their sadness, so that a positive nurturing attitude can re-emerge. If it does not, you have what is often called a mutual mal-adaption syndrome, in which the parents have failed to overcome their helplessness and the infant becomes more and more upset. Again, early intervention is the answer, but that intervention must be by those who are qualified. You know, as a parent I'm not so much interested in an individual's credentials as I am in his or her attitudes. I also think we need a lot of left-brain thinkers in this area. I'm sure many of you have read about right-brain versus left-brain thinking. Often this society tries to solve all their problems with the academic right-brain. Those we can't solve we just sit and argue about continually. I think we must have creative people in our field. When faced with blindness, parents often say that they feel lost, as if they are on a foreign planet. You hear that often in association with other disabilities. The more I've heard families talk about feeling alienated, the more sure I am that they are close to justifying segregation of their children. These feelings allow them to keep their children apart from society, so that it almost becomes an expectation. We will manage them somehow but never let them fully adapt to society. I do want to talk to you about a real positive thing. My first baby was Michelle, and you know what, I couldn't find anything wrong with her--nothing at all. Michelle at three months of age didn't know she was different from anyone else. But everybody and their neighbor knew she was different, because I heard about it a lot. I almost felt as if I had to adopt guilt by association--that if indeed I was the parent, I would have to feel bad about the fact that this child was born with something called blindness or a different way of seeing the world. Well you know, resolving infertility issues and having the opportunity to become a parent was a priority for me and for my husband. I have often joked with Shellie that, if she had been green with purple spots, it wouldn't have mattered, and I think that's true. Again our perspective, our approach, came from a feeling of joy and fulfillment. So at three months of age Michelle came home doing pretty much what any other three-month-old baby would do, except using her eyes. Many of the books, the few that there were, were negative. They spoke about how my Michelle would not learn to smile at the normal time. She would not learn to walk or sit or feed herself. Boy, it was so depressing. Even the doctors I went to would say, "You haven't faced reality." Now this child could have had congenital brain problems, congenital heart, liver, or kidney problems. There was a feeling in the community that everyone should be depressed because she was blind, but I just couldn't feel that way. So Michelle learned to sit up at about five or six months of age, and she learned to smile because, whenever I put her down in bed, I let her feel my face, and she saw my smile with her hands. She began to understand, and she began to smile back. You know, a funny thing happened then. Instead of being depressed, society said, "Look at her; how did she do that? She must be able to see." It became more perplexing for me--that total inability just to let her be who she was. I remember when she was about eight months old and was crawling all around the house--something, again, that she wasn't supposed to do but that she didn't know she wasn't supposed to do--and I remember that our then Executive Director of the local Association for the Blind came to take pictures. That child crawled with her hands out in front of her and her head on the floor. It was sort of an insect-like motion with the arms going out like antennae. Someone from an early intervention program came also to see the child--I think that everyone was afraid that we were going to be all right and worried that someone could really feel okay about a blind baby. That individual said, "Don't let her do that. She must crawl with her hands on the floor." I said, "Why? She would run her face into everything." What she was doing made perfectly good sense for her. She taught us about the coldness of the wall compared to the door. Many of the things she did that looked bizarre or unusual for a baby to be doing had reasons behind them. She was exploring her own environment in her own way. There was a big difference when Jennifer came home. She was born the same year as Michelle, but she had not had as easy a go in her first year or two of life. Jennifer is from Korea, and she did not get a permanent family until she was two-and-a-half. It took us nine months to bring her over because we kept getting this stupid paper from the government. They kept saying, "Are you sure you are aware that this child is blind?" We kept saying, "Yes," and then we would get the paper again. "Are you aware that nothing can be done about the fact that this child is blind?" And we kept saying, "Yes." The fact that she was blind was not the total reason for our adopting her, but it certainly was part of the reason. We liked Shellie. We liked her as a blind baby, and the thought of adopting and adding to our family a sister close in age who could share experiences with her seemed to make pretty good sense. So Jennifer finally came home at age two-and-a-half. I guess the government finally figured that we meant business and that we wanted her. Jennifer had been blinded due to vitamin A deficiency. When she began going blind, people in her country of birth still did very primitive things to differences, such as burning the eyes to get the bad spirits out. So Jennifer had undergone some scarring of the eyes. Often such children are drowned in Korea. Jennifer was left in a sewer gutter, actually, and was found by a passer-by. She received no early intervention, so when she came to us at two-and-a-half, boy were we surprised! This was very different from Michelle's story. This was a child who had experienced blindness sometime during that first two-and-a-half years and had not had anyone to help her understand anything. Developmentally, she was at a five or six month level. We had a lot of work to do. Do you know who did most of the work? Michelle. Yes, the sister who was eight months younger, but that is the truth. Michelle's abilities and the fact that she had been constantly habilitated and had positive self-esteem, running around as a very confident two-year-old herself, secure in her family, feeling okay about all that she was. Jennifer came in--this screaming, clawing, biting child. Jennifer really did not know who she was, where she was, or what she was. We needed to start all over. There were many days when I can remember leading her, by first pushing against her back and holding her hand. Then she began to hold her own hand and walk while leading herself. She had no internal security at all. I don't think she knew very well that she was a human being. She ate whatever she could find on the floor. She had been living like an animal. Fortunately, that isn't what it is like in this country. However, when early intervention fails, which I think we would all agree it still does sometimes, children never quite adjust, and families never quite adjust. Then, unless the child can feel okay about who he or she is, unless the youngster can feel that he or she is a respected member of society, everything we are talking about seems to be irrelevant. Our daughters have gone to public school. Between the ages of two-and-a-half and five, Jennifer was able to overcome her deficits and walk into a regular kindergarten classroom with sighted children. Michelle followed her the next year. They are both now juniors in high school. They earn honor roll grades, sometimes, like everybody else. They are involved in social events, like everybody else. They have fallen down the steps, like everybody else. One of my favorite stories about Michelle happened when she reached junior high. Kids are curious, you know. They have learned to adjust to the novelty of being "those blind girls in my school." But one of the first things that happened in junior high was that the kids thought it was real funny to jump over their canes as they tapped from left to right down the hall. Then one day a child came down right smack dab in the middle of Michelle's cane and broke it. Then she took it to the gym teacher and said, "I've got a handicapped cane. Can we tape it?" Their life has really been more children experiences--teenager experiences--rather than blind experiences. I think of them as seventeen- and sixteen-year-old teenagers who happen to be blind. I don't see them working in a sheltered workshop because they're blind. I think that rehabilitation needs to move out of the sheltered workshop and into the community. I am very concerned, though, about how that is going to happen because I also have a multiply impaired daughter who is eleven. There was a gentleman here earlier who said "Nowhere in the state of Pennsylvania do they refuse to teach children who are blind to read Braille." Well, let me tell you a little different. When a baby is born with some vision, that seems to be a real up to those who are working with the child. A tremendous effort is expended, trying to maintain the little bit of remaining vision, even if that vision is not really practical, even if it is only going to be used a little bit, watching television. These children might be able to see a leaf flying by, or they might be able to see some color, but it is not something that they are going to be able to learn to read with. With Michelle and Jenny, who were totally blind, there was no problem. Everyone knew that Braille would be the way that they were going to learn to read, and it was. But with a child who is legally blind--and I don't care what numbers anybody uses--each individual child with those numbers is different. I think that there is a time in education when you evaluate the practicality of using large print. How is that going to pay off in the job world? Is the child going to be able to use that skill for employability? Or would it be better to teach that child Braille because it is faster? If there is a stigma attached to Braille, that is another thing we really have to work on. I would hope that anyone working with my children and my young adults would have a positive attitude about their blindness--not one that says, "I'm sorry for you because you can't see" but one that says, "Hi, I'm glad to meet you. Teach me about yourself." Truly, what I have learned, I learned from my kids. I sense a real need when I am in parent groups; sometimes it becomes very painful because I am surrounded by parents who are still suffering twenty-five years after the birth of their child. They simply haven't been given permission to be okay. Until we do that, I don't think we are going to see eye to eye. It is important that early intervention for blind children take place in the home. I'll give you an idea of what I am talking about. With the young retarded child you can get along pretty well with having an early intervention program two or three days a week, where the child goes off to school and then comes home. Remember that this retarded child is seeing the world he lives in. Never mind how slowly his mind may work, he is still seeing the world. The young blind child, on the other hand, needs intervention in his home--his first environment. He should not be shifted from one place to another when he hasn't yet established what the floor is. I recently heard about a mother who had a child whom she pretty much left lying in a crib because she wasn't sure of what to do. As each month went by, that child looked more and more retarded. That youngster probably functions like a retarded child and will be labeled that way. That is where your statistics are. I heard a gentleman saying earlier, "Where are the blind children?" They are in other placements. They are labeled retarded, learning disabled, physically handicapped; and that is a shame. Unless they are totally blind and completely normal mentally, they don't have a really good chance at integration. Another thing that has to be addressed for young families is the medical orientation. As a parent I have often said that I feel betwixt and between. There is a medical orientation to your child, and then there is the educational one. I have felt over the past eighteen years as a parent that somehow responsibility for having these two orientations meet and work for the child is on my shoulders. When you have a child who is legally blind, such as our eleven-year-old, and you have a doctor saying, "This child is myopic, this child has severe optic atrophy, this child has wandering nystagmus [what you see in a child who does not focus on any object], and this child has damage in the vision centers of the brain," it is pretty futile to teach her to read. But you know what happens in the system. Because the child's visual acuity falls within the range of legal blindness instead of total blindness, she has not been given Braille. This has happened to my eleven-year-old, who does not yet read, who is still just listening to tapes. So there are successes, and there are areas where we still need to work. But now I would like to know if you have any specific questions. A listener asked what one thing in early intervention besides the importance of helping the child and the family feel okay would she point to as critical. Mrs. Rooney: Today I am glad to say that there are infant and toddler programs, but I question the experience of the teachers. One of my concerns is that someone with an orientation toward mental retardation who has no certification at all in Braille and has no experience basically in blindness should not be teaching young blind children. When Shellie was little and there was no program--those were the days when you still went to Overbrook [the nearest residential school for the blind]--we chose not to do that. The one thing I had was encouragement from the Executive Director of the local Association for the Blind. Although I'm sure she was worried at times she said "Go ahead. Why not?"-- that was enough for me. It may not have been enough for another family. Today there are early intervention programs. I think they are more successful, however, with the low vision child than they are with the totally blind. That is my own personal feeling. Questioner: As a parent, why don't you push for your eleven-year-old to receive Braille? Mrs. Rooney: We are doing that now. You know, there are some differences being an adoptive parent, and then there are things that are similar. Jessica, our eleven-year-old, was originally diagnosed as hydro-cephalic and totally blind. She had left cerebral palsy, scoliosis, and a very rare and complex seizure disorder because her birth mother took Quaaludes and amphetamines through the nine months of her pregnancy. Jessica's problems are a little harder to swallow in that what she is coping with could have been prevented. In my opinion blindness is the very least of her problems. The seizures are the most serious because she constantly has to start over. That has probably been a challenge to everyone who has worked with her--I know it has been a challenge to me as a parent. But at eleven it is not too late to say that the vision is simply not consistent enough. She tests, by the way, at a normal IQ, and we are really proud of that because with all those things wrong we were told that she would be severely and profoundly retarded. She attends a learning disabled classroom because they have no other place for her. She doesn't fit anywhere else, so they just stuck her there. But she attends regular fifth grade for social studies and science, and earns average grades. So it can be done even with a multiply impaired child. It's not easy; it takes a lot of working together. We feel that the Individual Educational Plan process has been one of the most wonderful innovations in the education of handicapped children. We never blame anyone. When something goes wrong, it is not the fault of the Instructional Unit or the vision consultant or the mobility instructor. It is not the fault of the school district or the state. It's not my fault, and it is never the fault of the child. What is at fault is our IEP. It is a neutral for planning and sharing. Unless parents have the professionals' respect, and unless those parents feel good about their child, that is not going to happen; and you as the educator are going to be trying to carry the ball yourself, which is an unfair expectation for us to have of you. Moreover, it is never going to be completely right for the child. The parents, no matter what problems they are having in coping or adjusting, truly do know their child. They just simply want to be assured that it is all right to feel okay about their child. They want to have some hope of seeing that child in the community as a secretary or a doctor or whatever he or she aspires to be. It doesn't mean that we can't learn at the same time about limitations, and it doesn't mean that we don't have permission to fail. One of my sermons in our IEP process is that my daughter has the right to fail. It is through failures, not by being over-protected, that we learn our own limitations.