^B00:00:20 >> Lori Wade is one of the most intense people that I have ever met in my entire life. She's willful. She's determined. She's funny. She's courageous. ^M00:00:39 [ Applause ] ^M00:00:41 >> Lori Wade is a young woman who was born with severe and multiple handicaps. But thanks to her own will and the determination and effort of those who love her, Lori has made great progress. This year, for example, she won second place in the 100meter dash at the Texas Special Olympics. A few years ago, it was all she could do to walk only 50 meters. >> She got started off, and she ran about half the way and then she seemed to lose -- this -- was this the year -- she seemed to lose where she was. She really didn't know for sure where she was. And she just kind of stopped. But somehow, she kept walking and she just -- she just kept walking and kept walking. And it was the longest 50 yards I'm sure anybody ever ran. >> Come on Lori. Come on Lori. Hey, let's go, Lori. >> She amazes now. She's doing things that I never ever would of thought that she was capable of doing ten years ago. Lori had no concentration just about. You couldn't sit with her at a table and do anything that resembled a table task for more than seven seconds. Then you know, it improved to ten seconds and 30, but she would just kick you under the table with these hard orthopedic shoes. >> The people who know her feel strongly that Lori could not have made so much progress without the close involvement of her mother and father and her educational programming. Their experiences in working with the educational system and with individual teachers offer helpful lessens to all of us. >> Annie and I first wanted to make this tape because I think we've noticed how much progress she's made over time. And we felt like because the family was so involved and advocated so much for Lori's program that she really made more progress than she would of. Plus, they had a whole story to tell in terms of their involvement and their support with and from teachers and the problems they've had with programs and teachers. And we thought it would be helpful for both parents and staff to look at it and gain an insight into what they can do to help a child grow. >> Lori is a rubella child. Her mother had rubella measles during the first month of pregnancy and the Wades knew before she was born that Lori might have handicaps. >> Annie went to the hospital very early in the morning, and Lori was born in a very normal fashion. Very quickly, as a matter of fact. And the doctor brought Lori back for me to see her on the way back to the nursery and mentioned to me that he had not seen a more perfect child, and everyone was really elated. But somehow there was still a reservation, I think, on the part of Annie, and myself, as well as the doctor. But there was some hope at that time. >> The heart problem we took her to the heart doctor and he said -- of course it terrified me, but he said it could be taken care of. And he also at that point asked if she was deaf. Somehow, I could deal with all of that. And then in about six weeks her cataracts were diagnosed, and that was really the first time that I felt like I had really been given a big burden, I suppose, or a big challenge, however a person chooses to look at it. I don't know exactly how I felt. I felt like it was an awful lot to handle. And at that point I didn't know -- I had no idea really, you know, what we would do. >> Lori also had suffered brain damage that impaired her motor and cognitive abilities. The Wades began searching for programs that could help Lori learn to use her body to respond to her environment and to make the most of what little hearing and vision she had. But few services existed for children with disabilities like hers. >> The speech and hearing center referred us to the Cerebral Palsy Center for services because there really was nothing for deaf/blind children. And there wasn't even early intervention programs for additionally handicapped or young deaf children at that time. And so we went to the Cerebral Palsy Center. And that's when her -- she was -- she had such limited programming UT Speech and Hearing and then at the Cerebral Palsy Center she began receiving physical therapy, occupational therapy, innergroup activities. >> When Lori was three, the Wades began looking for programs with more of an educational focus. But none existed. >> Well, we were advised that we would need to have six students with the same type of needs before a program could be established. And so we naturally went back to the only person that we knew about at that time which was a Commission for the Blind caseworker. And we asked that caseworker if there were other deaf/blind children in the community or in the outlying areas. And we were advised that there were several others but that we should not contact those people because they had severe family problems or severe financial problems, etc. that they felt like it would be much better if Annie and I did not approach them about our problem which was getting an education for Lori as it were. We met with absolutely no success. And we had gotten to the point where we were terribly depressed and frustrated about it. It was -- a year had passed, I guess. And we finally decided that we were going against the advice of the Commission for the Blind caseworker. And we contacted one of the parents and learned very quickly that that parent was looking for the same things we were. We contacted another of the parents with the same response. And in only, you know, a matter of a few days we had four other deaf/blind children who were at differing ages but in need of the same kinds of services that we felt we needed for Lori. >> With the start of a new deaf/blind classroom for children in Austin, the Wades began their involvement with the educational system. Their earliest experiences with Lori's teachers were positive ones. One teacher who worked with Lori for several years developed a particularly close relationship with Lori and her family. >> I have very definite images of those early days of trying to learn to teach her to feed herself. Cup, she would learn -- she learned to pick up the cup and drink out of it, but the minute she finished drinking, she threw it. I'd remember a volunteer we had. It was a man that was able to get her the first time to not throw her cup. I remember the first time she ever picked up a cookie and put it in her mouth. You would of been trying to teach her to feed herself. Her daddy was observing. And finally, she took that cookie and took it, bit it, chewed it, and swallowed it. It was the first time she'd ever put anything in her mouth to eat. And of course, he came out of the room with tears in his eyes. I didn't even know he was there. There was part of it I didn't know he had come in that day. I had those kinds of images from her. >> I think I felt very intimidated at times, but I definitely admired her and respected her a great deal. And I knew that Lori's -- at that time and even this time agree that her future depended on being on doing what Jill said to do. I really believed it. And I feel like what we did at that time gave her a very sound basis for her future. ^M00:10:10 >> She was one of those people that didn't take no from us. We'd say no, we just can't do that or no, we can't afford to do that. We don't have the money or we don't have the time. And she never laid the guilt trip on us. But she always encouraged us and gave us some resource or something that we could grab hold of. And so we were able to seize on that, I think, and make the best of it. And we knew we had some support there other than just within the family. >> Jill and Annie's relationship as parent and teacher was a successful one. But Jill Gray left. And the new teacher, Sally Schurr, adopted a new approach to Lori's program. Problems emerged between parent and teacher. >> I remember Sally Schurr from the Dallas program. And I had a great deal of confidence in Sally Schurr. She had worked in a program for quite a while. And I guess that I personally was elated that she was coming on board to be our teacher. >> So we knew her a little bit. And we thought well, it should be okay, you know, even though we hated to see Jill go. But when she came, one of the first things I asked her was if she was going to make a lot of changes. And she said well, no. You know, not really. And then but somehow, she started making changes pretty fast. >> In fact, when I first came I did not plan to do this. I really thought that what I should probably do is for my first year was just maintain things the way they had been. But it was such a struggle to get Lori to do the table work, and I thought it was so inappropriate for her, I just couldn't do it. I just thought no, can't do that. So I tried to talk it through. It did not get any negative feedback from the Wades. >> I wasn't ready for the immediacy of it. I felt like I needed a more longer transition period. And as a result, I began to withdraw and not communicate. And I resented what was happening because so many of the things that we had worked so hard on, that Jill had worked so hard on weren't being done anymore and some of the things were changed. >> My feeling about Lori when I worked with her was that she was very bright and very spacey. And that her primary problems did not and would not result from a lack of intelligence but from a lack of investment in other people and in social relationships. I felt that her primary problem was on the affective level. >> I felt like that I was given no credit for knowing Lori. And that this person came in and knew her maybe six weeks and was able to do an assessment on her. And I resented not being given credit for having some knowledge. A lot of the philosophy changed in the program. Lori began to exhibit behaviors that she hadn't exhibited in the past. Her behaviors -- one of the things that she had quick sucking her fingers, and shortly after Sally came she began sucking her fingers again. She began to develop some nervous habits. And so I was beginning to see a lot of things that bothered me quite a bit, and I didn't feel comfortable enough with Sally to be able to talk to her. For one thing, I was rather shy and Sally was rather vocal. At that point, I didn't have the confidence to confront Sally or any teacher. I wouldn't of had -- I wouldn't of confronted Jill. I wouldn't of confronted anybody. I just didn't have the confidence to do it. >> It was either late that spring or the following fall, and I'm not real clear when it happened. I remember gradually becoming aware of negative vibes, I guess, from the Wades because they still never said anything overt to me. Lori learned a fancy maneuver on the trampoline one afternoon while Annie was here at a parent meeting. And I remember telling her Lori learned to do this, and she said well, I'm glad she's finally learned to do something. And I went ooh. Ooh, things are not good here, what's going on. And I think I then went and started talking to people and found out, however, that the Wades were very unhappy. And that both the director of the center and the social worker had known this for a long time and had not told me. And I was just devastated. >> Clearly, this was a difficult, painful, and costly experience for everyone. The Wades gained a reputation as difficult parents, and Sally eventually left the center. Looking back, both parents and teacher agreed that the situation should of been handled differently. Sally needed to know about the Wades unhappiness over her instructional approach, and the Wades needed to know that their feelings, perceptions, and expectations about Lori were respected by the teacher. >> I made too many changes too fast. And I knew it and I did it anyway. Had I known the depths of Annie and Garland's dissatisfaction, I would of done things differently. You know, I would of brought some of that stuff back. I would of made a change in Lori's program. >> I think that possibly if some way the teacher could of been more perceptive. And I don't know, you know, whether that can be taught. I don't know whether teachers can be taught to do that or whether it's just an individual thing. But I don't think that people can expect parents even if they know a lot, you know, to separate their emotions from what's really happening. And I don't think they can expect a parent to be totally objective in a situation like that. And for that reason, I think that they need to respect that parent and provide them with a way to express maybe -- maybe not necessarily verbally but in some way participate in the development of that program and programming for that child. >> I think they wanted Lori to be doing firstgrade activities. She was firstgrade age and they wanted her to be doing regular school activities. >> Well, I wouldn't suggest telling the parents their expectations aren't realistic because that usually will just make them angry and frustrated and would broaden any gap that there might exist at that time. I think the only -- well, I think that the parent has to realize that the expectation is unrealistic for themselves. And the only thing a staff can do is to provide the environment for the parent to learn that. >> After Sally left the program, the Wades were determined to learn from their experience. Annie slowly resumed her involvement with the program and was able to develop a good working relationship with Lori's next teacher, Dale Rudin. >> When I first came to the program that Lori was in, I was a little scared to work with her and her family because all I had known was there was trouble in the past. And nobody really explained what that trouble was. And I tried just to think in terms of I'm working with this child, nothing else went wrong, this is -- we're going to start new. And that was really pretty hard to do at the beginning. And as I met the Wades and saw their involvement in the program, it really became pretty easy to do. ^M00:20:14 >> Like many children with severe handicaps, Lori, she got older, developed some serious behavior problems. >> When I first met her she was very little. I have a visual for her that she's small and cute and looked just perfect. Except that her behaviors were just awful. She hit people. She poked their eye. She grabbed their glasses. She'd look real close up in their face and people would think that oh, she was hugging them but really all she was doing was flicking off the side of their faces. She was a handful really. >> Susan Rice, another of Lori's teachers, also remembers the frustration with trying to cope with Lori's behavior. She describes what Lori was like at age ten. >> Her behaviors, her distraction. She's real distracted by her glasses. Her glasses were always a problem. And they broke frequently or her hearing aid would break frequently. She would break these items herself. ^M00:21:20 ^M00:21:25 A lot of inner turmoil it seemed that distracted her from any learning that could take place. I felt sad for her, sad for her family. And frustrated that we couldn't get on with the learning that I thought could take place because of all this intervening behavior. >> With Lori's difficult behavior adding to the everyday pressures and frustrations of teaching, it became even more critical for Lori's teachers to maintain good relationships with her family. For both Dale and Susan, contact with Lori's family provided the encouragement and feedback they so rarely received from Lori herself. >> At one point during the week, I guess, I was at an alltime low and I just decided this kid is driving me crazy. She is a monster. I don't know how her mother and father deal with her at home. You know, that very basic level of I can't do this anymore, I need some support, what's going on. And I decided to call Annie up. I knew she was at home, and I called her. And it was about 2 o'clock, and I said hi, what are you doing? And it was like nothing. I said well, do you think it would be okay if I came over? Your child is driving me crazy. I need to talk to somebody about it. You know, I think there must have been relief in her voice that here was somebody that had that same kind of feeling at times even though I think she knew how much I cared about her, but she was just driving me nuts. And I went to the house and after that our relationship qualitatively changed. There was no doubt about it. That was the beginning of really and honest exchange because we both knew how each other felt. >> Well, we had daily contact in a log that we wrote back and forth every day. The Wades were there. Any time I asked them to be -- I knew any time I set up a program and wanted carryover at home they would do it. They always let me know what was going on with Lori. They were real supportive. Very wellinformed. >> The Wades have sense worked with a number of teachers. Not all the experiences have been happy ones, but their earlier experiences, both positive and negative, have helped them to go on learning from their own mistakes and to give Lori's teachers time to learn from their mistakes. And perhaps most important, the Wades have learned to trust their own instincts about their daughter. And to persevere. >> I think even when Annie and Garland were even in different situations in schools or with teachers, I know they wanted to go away and hide and just say I can't deal with this, but they really never ever backed off. When they had a problem to face with the school, they didn't get along with the teacher, they disagreed with programming, they always maintained contact. You know, it might of taken them a couple of days to recoup or whatever, but it's really paid off for them because Lori has made way more progress than she would of without their support and without them accessing the system the way they did. >> Taught Lori seven years ago. And just watch -- I haven't seen her really since then. And just watching her just now was a real shock to me. I was real delighted and surprised at the things that she's doing now. >> What has happened over the past few years is that she seems to be developing more of a sense of herself and a sense of herself in relation to other people. And so she can be reasoned with a lot better now, you know. And you can talk to her about like you would just about any other person maybe on a much smaller scale but, you know, you can talk to her about how you feel, about how she feels, about this is something you got to learn to do. That is definite movement. Two or three years ago I mean, she wasn't asking about anything unless it absolutely had to do with her needs or desires. >> Lori's progress and the experiences of the Wade family show clearly that parent involvement is an important though difficult process. To make the process work, the parent and teacher must contribute energy, understanding, and openness to the feelings of each other. Ultimately though, it is the teacher who must go the extra mile. >> I feel that the burden of understanding really falls on the feature because for whatever reason they need a job, they love these kids, they wanted to work with families, they've chosen the work whereas families have not done that. They bring with them all sorts of issues involved in grief, why did this happen to me. And I think you can ask any parent who has a child with disabilities they would much prefer that not exist. That's not to say they don't love them and care about them and, you know, want the best for them. But they would not of chosen that whereas a staff member chooses it and it can be hard and difficult to work with. The work is hard and difficult but they've chosen that. So I feel they really need to every now and then just step back and remember that, I guess. >> Looking at the Wades experiences, it is possible to identify some specific factors that can contribute to good relationships between parents and teachers. First, teachers need to be open to the fact that parents often do know a great deal about their own children. >> I mean Lori is her parents child, and she is ultimately their responsibility. And so you know, that business -- and they know her better than I do. They have lived with her for 18 years. And as much as I know about her, they're still going to know more than I do. I also know enough to know just in terms of sort of outside objective things that, you know, Lori can behave at home a different way this very differently than she does at school. So what -- you know, so there's a point at which my knowledge would be incomplete anyway. I trust the Wades instincts about what to do with their own child. I mean that's pretty much what it boils down to. >> I would say, first of all, to teachers that parents, in many cases, are the expert on their own child in terms of their feelings and in terms of what they want them to accomplish. And I think teachers come out of school not knowing that, not realizing that. You've been to school four and five years and you think you know what's best for that child and how best to teach it. And I think parents and teachers just must work together for deaf/bind kids. >> A second factor is remembering that parents aren't the only ones who bring their emotions with them into the classroom. Teachers too have feelings about their students. And these feelings, if not acknowledged or understood, can lead to conflict. >> Also, I think it's important for us to be aware of the intensity of our emotional attachments to the children because we do get real attached. And we get very possessive and we get very righteous about what the child needs to be doing. >> Both teachers and parents must be willing to communicate openly with one another even when what they have to say or to hear maybe painful or difficult. >> Communication between parent and teacher really involves listening to each other. I guess I'm really talking about listening on a level that isn't something that just passes in through the mind and goes out. I think it really involves the heart and being able to try and take another person's perspective. I think that's really hard for teachers to do, and I think it's hard for parents to do too so that both people might want the same thing for the child which is to have them make progress. But unless they communicate with each other and really get to a different level of communication than just sort of chitchat, I don't think they'll ever really know what each other wants or the way to achieve it. >> Though teachers rightfully expect parents to contribute to their child's educational development, they must be able to give parents leeway during difficult times. ^M00:30:22 >> There are things that, for instance, that I wish were going on at home in terms of feeling like ideally if this was happening at home, you know, her abilities would be progressing more rapidly. Ideally, this should be happening but it's not, but that's okay in some sense because what does happen at home is enough. You know, Lori is loved. She is cared for. She is taken care of. She is communicated with. She gets to go places. I mean all those things, you know. And whether or not she practices washing the dishes or she practices, you know, taking out the garbage all the time or all those kinds of things, she can do that here. Also, at this point in time, you know, I sense that -- and from what Ann Garland have said to me, you know, they're both tired. And they're both the family system itself is sort of tired and down and so everybody needs room. So you know, that Lori's getting those things at this point in time I think is great. >> Finally, it is essential for teachers to keep in mind the kinds of pressures that parents always face with raising a child with handicaps day after day, year after year. >> I do know that it's much more difficult to do things that people normally do. Just going to the grocery store is difficult. Just getting something done around the house is difficult because, you know, we cannot leave Lori alone. She's not independent. And when she's in need of something she has no idea that we're involved in something else and would prefer that she leave us alone. And even if we do let her know that we prefer she leave us alone, she doesn't. >> This fall I stayed at Annie's and Garland's house. And I had always heard for the years that I've been involved in Lori's life that Annie really never slept through the night because Lori woke her up. And I always felt really badly for Annie, but I never realized what that must have been like. I thought I was really empathic and understood. And then this fall when I stayed there, in the middle of the night I hear, bop, bop, bop, bop, bang, bang, bang, bang, and I just startled and woke up and thought what is that. You know, my heart started to palpitate. And I thought something horrible has just happened. In fact, it was Lori waking up in the middle of the night. And I went to see what was wrong, and we had a nice chat. And she was soothed, and I felt nice that I kind of helped. And Lori went back to sleep. And then the next night I was still there and in the middle of the night I heard bop, bop, bop, and I just woke up again. That same feeling. I think it took me a little less time to realize it was Lori. But it really made me understand how horrible that must be to wake up like that and have your sleep disturbed. And it's just a burden to deal with. >> Last month I was so irritated with her because I wanted to go to bed early. And I thought I'm going to get to go to bed early, you know, I've got her in bed. And I lie down on the bed and she came in there and, you know, I was so irritated with her but she was so beautiful. She was just -- really looked pretty. You know, all I could do is just say Lori, you're just so pretty. Yet, I was so furious with her at the same time. But I guess I have a lot of moments like that. You know, I just look at her and she is really a beautiful little girl. And when I see her like that I forget the bad times. >> Her parents have older children like Lori. The ultimate pressure is the great weight of the future of what will happen to her when her parents are no longer around. >> We're really proud of her for what she's been able to accomplish. At the same time, with all those accomplishes, and here is one of them, she's able to write numbers up to 100 independently. And she knows what they are. That's tremendous. But even with all those concepts, with as far as she has come, with all of her diligent efforts that all of the other parents, the teachers, the administrators, the therapists, that everyone has put in to that one child all these years, she is still not an independent person. And I believe cannot be an independent person. And that in itself is the thing that concerns her parents the most because the possibility exist that we will not always be here to fill that gap of dependence. And we certainly can never rely on the political system, or the educational system, or any other system to provide that for her. ^M00:36:27 ^M00:36:31 >> Goodness. You know, she's so much a part of my being that it's hard to even separate her from the -- ^M00:36:40 ^M00:36:46 So much of my energy goes into her. And sometimes I love her so much that I feel this -- this is a weird thing to say. Sometimes I love her so much that I feel like it would be better off if she died. And that sounds real contradictory I think, but I feel like there is no one ever on this earth that can love her as strongly as I do and care about her as much as I do. And it would just be better if she didn't have to live without that at any point. >> For Lori, the future is uncertain. Few services exist that would enable her to continue the personal and educational progress for which everyone has struggled so diligently. But those who love her are hopeful that Lori and others like her will have the opportunity to live full and productive lives. >> Ideally, she would be living with her peers. A group of peers of hers. Four, tops including her. And they'd live in a house or they'd live in an apartment. And there would be people to supervise them of course because I don't see Lori living independently. But you know, the group home business but a small one or an apartment. And that apartment or that house would have all kinds of adaptive equipment in it also that lowvision people might need and deaf people might need. And then she would be -- Lori would be working in the community. She would not be working in a sheltered workshop. I don't think that is her forte. I think if that's all that there is that will be a real shame. But you know, she could work in the library, or she'd work stocking groceries somewhere, or you know, I don't know, something like that. She'd see her family on the weekends whenever. You know, maybe every other weekend or every weekend, whatever they wanted to do. She'd get to travel. >> Well, I think she has rights in terms of being in the community and not being tucked away in some back ward somewhere. She has the right to continue to grow and to experience new things. And to just be part of the world like us. ^M00:39:32 ^M00:39:43 >> I think that the first time that I had a real -- that I was really convinced that Lori had the ability to think and to develop concepts on her own was when she was very young. We were visiting Annie's parents in [inaudible] over the Christmas holidays. ^M00:40:13 And it snowed. It was the first snow that Lori had seen. She looked at it from the second story window. It was white. She was curious about it. Could not wait to go down stairs and see what that was all about. And when we did get her outside she stepped off the porch very lightly into the snow as if it were a swimming pool to test it out. And then she sat down in it and put her hands in it. And she pick some of it up. And I'll never forget, her sign, you know, her sign for that was cold milk. That was tremendous. I thought, you know, the kids got it together. Shoot. ^E00:41:46