Future Reflections January/February 1983, Vol. 2 No. 1
An Interview with Carol Syslo By Barbara Cheadle
Parents often tell me how much they learn from other parents who also have blind children. I was very pleased, then, when Carol Syslo ... parent of a nine year old blind daughter... agreed to do an interview for Future Reflections.
Carol and I met about five years ago when parents of blind children in Nebraska organized into a state group. Carol, her husband, Ed, and their two children; Tara, nine, and Greg, who is four, live on a farm in central Nebraska. During these years, I've grown to admire and respect Carol's courage, honesty, tenacity, and good sense. I was particularly struck with Carol's willingness to face and dela with her own fears and misconceptions about blindness; not hiding or denying them, but not wallowing in them either.
She sought out the advice of a blind adult in her community; she attended meetings of the National Federation of the Blind; read the Braille Monitor (the monthly publication of the NFB); sought out other parents of blind children; and found books and literature to read about blindness.
Mor importantly, she thought about what she was told and what she read, and then applied her knowledge and her own good sense to the problems and challenges of raising a blind child.
Like the rest of us, Carol is still learning about blindness and parenting. We do not always agree on specific issues, but we respect eachother and attempt to learn from eachother. One thing, perhaps the most important thing we have in common, is a respect for blind people ... a respect which transforms itself into a belief in our children.
One more thing. Tara, who is now a fourth grader, has always attended her local public school. That did not occur without a great deal of effort on the Syslos' part. Although they had the law, PL-94-142, to back them, they had to work hard to convince the local school board and officials that they should provide the necessary support services so Tara could stay in her local community. That is no small accomplishment for any parent in any school system that does not already have a vision program; but consider this: Tara attends a two-room school house with a total of 20 students. Tara is the only fourth grader! How is she doing? Is she getting a good education? Read on!
Barbara: What kind of person is Tara?
Carol: (Laughter) She's very out-going. She really has absolutely no trouble getting along with other kids and doing anything she wants to do. If the other kids do it, then they figure out a way that Tara does it, too. She loves to run. She likes to play baseball. Of course, she can't hit the ball, but they either hold it in front of her and let her hit it off their hand or somebody else hits it, and then grabs her, and away they run. If somebody that wasn't used to it saw it, I'm sure they would just think we were abusing her terribly. (Laughter) They're not gentle with her at all! (Laughter)
A year ago she was in a track meet of all the rural schools in this area. And we had a little bit of trouble. A couple of the teachers from a different school thought maybe this would create quite a problem, having Tara in the track meet, [that] she would cause other kids to fall and this and that. And our teacher said if Tara wasn't going to be able to go, then the whole school wouldn't come. And the teacher we had before we had transferred school districts, said if Tara couldn't come, her school wouldn't come. So the other teachers said, "Okay, okay!" So the day came, and Tara was absolutely no problem. When she ran in the races, a real good friend of hers (Kathy) ran in front of her and talked the whole while, and Tara just followed the noise. There was noboby touching her or anything, and she won one race and came in second on another. And [in] the sack race, Kathy ran along side of her.
She loves to read. She reads for hours at a time, and she's very good at reading. Last year when she was in third grade, they tested her and she had a 6.5 grade level on her reading. But when she was younger, I would notice she would be very content to sit in the middle of her room and listen to these talking books or records, and she'd just rock back and forth.
Barbara: Oh, did you do something then to get her out of that?
Carol: Well, I did sort of. I didn't give her all the talking books when they came, and I tried to discourage her from listening too much. I think a lot of blindisms that people think are just fine are really needless. All you have to do, you know, is do something about it.
Barbara: You mean it's a matter of giving your child something to do to stimulate them?
Carol: Yes. I would think so.
Barbara: Well, it sounds like at some point you decided to encourage her to be physically active. Did you go through a stage where you were really frightened of her getting hurt and really didn't want her to do things?
Carol: Oh, yes. But I wouldn't really stop her. No, I couldn't stop her. I was talking on the phone one day and looked out my kitchen window, and she was climbing a big tree out in the front yard, and my heart just stopped. But I kind of yelled out and said, "You be carefuP." And she said, "I will, Mom." (Laughter) So I stood and watched. It's very hard, you know, the first time. Now she climbs up a tree, and I don't really think too much of it. Well, I do I guess, but no more than I do my little boy climbing it.
Carol continued to talk some about her blind friend, Mary, who is also a mother, and how Mary has helped her understand what Tara can do. She also described what she has learned... "thepositives and the negatives" . .. from other blind people. Jim and Barbara Walker, a blind couple from Nebraska (Jim is the president of the NFB of Nebraska) were specifically mentioned. Carol called them a "fantastic influence" on what she thinks about blindness and the capabilities of the blind.
Later, Carol discussed some of the difficulties in making decisions about what is right for Tara. Cane travel, or mobility, was one area where difficult decisions had to be made (Tara began lessons with a cane when she was in kindergarten). That led to a conversation about making decisions when you are not sure what is right. Carol had these comments on that subject.
Carol: Sometimes when I just don't know something, and I really don't have a real positive opinion, I let Tara decide. Because nine times out of ten, she decides right . . . When we're trying to do something at home and I'm frustrated, I finally give up, and I say, "Okay, Tara, tell me how to tell you." (Laughter) And she does, you know.
Barbara: She's been learning to be involved, to be independent, and she learns that her opinions count.
Carol: Absolutely. There's very few things that I do, really, without talking to her about it. When we have school meetings, and they want to know what I think or what I want, I have always asked Tara first: "Is there something that you think I should bring up? Are you having a problem, or is there something you think you need, but don't have?" Usually she'll say no, but once in a while she'll come up with something, and I'll go [to the school] and they'll say, "Well, that's a good idea; we never thought of it." And then good old Mom gets to take the credit for it. (Laughter)
Barbara: I know you've had some more contact with a variety of blind people through blind organizations, you mentioned the NFB; what have you learned there about what is happening now that will help give Tara better opportunities [now and in the future]?
Carol: As far as what the NFB is doing, of course they're making terrific strides in trying to [eliminate] discrimination. We did have a problem with discrimination in insurance. We couldn't get life insurance for her. That was about the same time the NFB had quite an article in, I guess it was the Braille Monitor. So I did write a letter, and sure enough, by using the NFB name and their information, did get her life insurance.
Barbara: So ... instead of accepting it, you said, [this] is discrimination, and you did something about it.
Carol: Oh, absolutely. I want Tara to have all the rights a sighted person would have, but I don't want her to take advantage of this. I don't think she should expect more because she's blind.
I want her to feel equal, but no better, and to feel no one owes her any more than they owe someone else. But then I also think they should treat her no worse than they would anyone else. It hurts when she's excluded sometimes, but then I have to stop and think, "Well, if she could see, not everybody would like her; so why in the world should I expect everybody to like her when she's blind?" You know, I want her to experience the bad with the good of growing up, as long as the bad doesn't come just because she's blind, you know. If somebody doesn't like her, that's fine. They don't have to like her as a person, but they better not not like her just because she's blind. (Laughter)
Barbara: In other words, see her as a whole person.
Carol: That's right, that's right.
Barbara: Is there anything that you would do differently, if you could start over?
Carol: I don't know that I could've done anything differently, because at that time there wasn't the opportunity as much. When we found out she was blind, it was absolutely devastating... but when she was four years old, they [the state] did hire a preschool counselor. This lady would come out once a week, or every other week, depending on her schedule, and talked to us and helped us with what toys to buy and this and that.
I wish there had been more availability of this from the beginning. We really stumbled through the first four years. I had read a lot of articles, and they said to get moving things and things that made noises to make Tara move. So I did it.
Barbara: Did it work?
Carol: Yes, it worked. And, yes, it was the right things. But so many things I was really guessing at; and so many things I probably made a mistake at because I didn't have any idea, I was just guessing. And probably had I had somebody to talk to, maybe they would've known about it.
We discussed parents groups shortly after that, which was one of the smartest things we did. Learning from other parents is probably the best way of knowing anything. The professionals are fantastic; but living with it, you learn so many things, or different things, I guess. Everyday living, you know. I think any parent of young children, especially the preschool ones, they really do need that contact with other parents. It really helped me, and it was probably the first time I could ever talk about it to anybody.
So that is what I would do different, but I don't know that I had a choice to do it, you know. I'm glad that it's changed for the new parents. I hope they take advantage of all these things. I find that a lot of parents just don't really take advantage of it, because they don't want to deal with it. And I think that's a terrible mistake.
When we started the parent group, and we heard of other parents that had babies, [we] contacted them. [But] they have flatly refused to have anybody come and talk to them. And I think it's real sad, but, of course, we can't force them to want to.
Barbara: So, even if services are available, even if people are there to talk to them and be supportive, there are people who will refuse it, because they are still so terrified [of blindness]?
Carol: Yes. And I think if I had not known a few blind people (especially Mary) when we found out Tara was blind, I wonder if maybe I wouldn't have been the same.
Barbara: You knew Mary before you had Tara?
Carol: Oh, yes.
Barbara: So, you had a positive view of blindness before you found out about Tara?
Carol: Yes. And how many people would just have the negative, and what that must do to them. I'm sure it would be different.
Some more discussion followed about the lack of parent involvement with other parents and blind adults, and how this affects parents' expectations of their children. Carol had this to say:
Carol: Well, I think we tend to make excuses. We don't expect our kids to be [competitive]. In fact, [someone] made a comment to me once, "Well, you know, you can just normally expect a blind child to be put back at least once through school."
Barbara: Did you believe that?
Carol: Oh, I didn't like that, and she knew it. And I said, "Tara's not going to be." And she said, "Well, Tara's an exception." And I said, "No, I think a child that has the ability, whether they're blind or sighted, can do it. I just can't believe that they automatically have to be put back; and we should accept that just because they're blind, they're not going to do as well."
Barbara: Right-on, Carol! (Laughter)
Carol: Well, it is true. I think given the opportunity, they can do anything. But just getting people to give them the opportunity!
Barbara: I was thinking the other day, if I had a dollar for every time my blind friends or acquaintences have been told how "exceptional" they were, I'd have close to a thousand dollars right now. And it seems to me, if there are that many "exceptions", people had better rethink what they are saying.
Carol: Well, that's true.
Barbara: Carol, you seem to be concerned not just about your child, but interested in helping other people.
Carol: I think we have to. When we work with Tara, even in our school when we have to have our little battles with our school board, it isn't just for Tara. Because what we do... [is] going to affect all the kids. And I think in years to come, it's going to get easier. But the state is just within the last few years really supporting our kids staying at home and going to school.
And I hope we do a good job of it and prove to the state that it's a needed program. With budget cuts you really have to justify all this, because it is an expensive program, too.
But to me, well, I just can't imagine her not being here. That was very selfish of me. I always said I thought Tara deserved the chance to go to school with sighted children, but I wonder sometimes if it's probably just because Mom didn't want to say goodbye to her. (Laughter)
Barbara: But it has worked out.
Carol: Yes, I think it has, but you know, I could've gone the other way. And it was something that I said from the beginning, we're going to try it here, and if it doesn't work, then we'll do the other alternative, which of course would have been the residential school.
We've had problems, but nothing that we haven't been able to solve. But we've got to be willing to do the extra work and the extra talking. Everytime I turn around there's another meeting to go to. (Laughter)
Barbara: Let me summarize a few things you said. You said a couple of things that make me [think] that you see a little bit further down the road. One was the comment about opportunity and wanting Tara to live a normal life, to be equal, but not be a freeloader either, not to expect more than her due.
One of the other things was how, even with support services available, parents aren't taking advantage of them because they are afraid of blindness and don't want to deal with it.
Which leads to the conclusion that a great deal of our work as parents, if we really want our children to succeed, lies in helping to educate the public about blindness; to present a positive image of it, that it is not a tragedy, and that blind people can live normal lives like anybody else. Is that statement accurate?
Carol: I think so.
Toward the end of our conversation, I asked Carol to give me some specific suggestions for Future Reflections. We talked some about games (she considered "Simon" one of the smartest investments she had ever made); the talking calculator available through the NFB (Carol called it a "fantastic buy"); and materials that would help Tara grasp concepts she was learning in science and other classes in school.
Carol kept going back to the necessity for giving blind kids hands-on type of experiences. Ed, Tara's father, helps a lot in giving Tara these kinds of experiences. According to Carol, he is always bringing in all kinds of "little creatures" for Tara to feel. . . including a mouse in a mousetrap!
Carol described how she and Ed helped Tara learn one concept, "It's so hard to get Tara to comprehend so many things that we take for granted. We've had to climb up on the roof, and lift her up on the roof, to make her understand how big the house was after she was seven years old. We thought she knew the house. We'd talked about the roof, and we figured she knew where the roof was. And one day I said, 'Daddy's on the roof.' And she said, 'Where's that?' And I thought, 'My God, you don't know where the roof is!' Sol yelled, 'Dad, here's Tara!' And I lifted her up."
At the conclusion of the interview, Carol had this to say, "Right now, just getting [Tara] to understand, and be the best person she can be, and experience as much as she can experience, is probably the most important thing I'm concerned about, you know. Fight my battles when I have to, as far as legally, but that's not what I worry about everyday, you know."