Unlimited Possibilities

MAKING OUR WAY AS PARENTS WHO HAPPEN TO BE BLIND
(A Panel Discussion at the 2001 State Convention)

Sharon Maneki: On this panel we have parents with young children, teens and adult children. It represents single parents as well as parents of adopted children. Parenting is one of the most important functions that an individual can undertake. Blindness presents both challenges and rewards, just as it does in all other aspects of life. So here to share their experiences are: the moderator, Curtis Chong, the Father of Tina; Panelists: Tracy Hall-Hennigan, Mother of William; Shawn Jacobson, Father of Zebe and Stephen; Bernice Lauder, Mother of Raymond, Ryan, and Rachel; Patricia Mauer, Mother of David and Diana; and Gary Wunder, Father of Missy. Here's the moderator - Curtis Chong!

Curtis Chong: Just to show you how good a parent I am. I have a daughter. She's now twenty-three years old, and just the other week she told me her car died, and so the Chong bank had to fork over some money. It never ends those of you who haven't gotten grown children yet. But, just to show you how good a parent I am, and how well I'm loved, there was a time many years ago while I was traveling at an NFB convention my daughter goes up to Mrs. Chong and she says, "Mom, when Dad dies can we get a dog [laughter]?" So that just goes to show you.

When you are a blind parent, when you have children, some of the things that you have to think about relate to the National Federation of the Blind, and one of the reasons we have panels like this, are things like - what should a blind parent teach children about blindness and how early in a child's life should the subject of blindness come up? Things got to the point when my daughter was really little where she would put my hand on this print stuff and say, "Look, Dad!" So, she figured that my hand was the conduit for information. What effects do attitudes about blindness held by your children's friends have upon your child's attitude about your blindness, and what should you do to help improve those attitudes? What are some of the alternative techniques that a blind parent can use to keep track of children? What do you do about homework? How do you know your child's well-dressed? And what about the ultimate - sneaking around? What do you do about that? Some other provocative questions - would you let your children write checks for you? Read your mail? Drive? There is no one right answer to any of these questions.

And therefore, having now set the tone of the questions, we're going to do the panel in the order Sharon read the list. So, the first one to go here, right out of the shoot, is Tracy Hall [applause].

Tracy Hall: The questions I'm going to talk about are would you let your child write checks for you? Would you let your child read? Would you let your child drive? If I need a check right away, I would get my son to write it for me. Otherwise, I would always get someone else to write my checks. As far as reading, if I can catch up with him and tie him down, he'll be able to read for a few hours. But, most cases, it's almost like pulling teeth and that's not only with my son. I'm quite sure a lot of blind people have this problem with family members period. Trying to get them to read something and not reading exactly what's on the paper. They'll take the paper and look at it and then say every couple of lines, "Oh, you don't need to know this! Oh yeah, you have an appointment on this day." Look, read the thing straight out. Don't give me bits and pieces of a letter. My son and I fuss all the time about that, and he gets upset and I get upset and then I say, "Well, look, we'll do this later on. We'll come back to it later." But that's the biggest problem I have is with reading.

As far as driving, my son is not driving yet, he's in the process of studying for his written test. I promised him if he does right and keeps up the good work that I might just help him out in buying a car. I would meet him halfway. And that's about it.

Curtis Chong: Thank you, Tracy [applause]. The next one to come out is Shawn Jacobson, Father of Zebe and Stephen.

Shawn Jacobson: As far as Zebe doing homework (Stephen is not really old enough yet - he's in kindergarten, they don't give homework in kindergarten yet), Zebe's homework breaks down into the written area and into the math area, and this also impinges on the question of reading because that's one time when Zebe definitely reads for me. The toughest is math - not because of any blindness related stuff but because I do math more by instinct then anything else and that's really hard to communicate to your daughter. We had one question set where they were supposed to add up different coins to decide how much it was worth and I'm going, “How many big silver-looking ones, how many medium sized, how many small ones, how many brown ones do you have?" And so I would say, "You add this, and what's 25 plus 25, and go I don't know this", and just kept working at it. We finally got it right. A couple times Zebe got frustrated with me and we put it down for a few minutes and did something else, and came back to it. So the answer there is blindness had something to do with it, but that was just the tip of the iceberg.

As far as written stuff, if Zebe can't say a word, I'll tell her to spell it out for me and then she'll ask me how to spell words and that works pretty well unless it is something like "dear." Why don't you read the sentence that it's in? Is it "Dear John" or “the deer got down the road,” or what have you.

As far as sneaking in, we're real lucky because Stephen is too loud to sneak and Zebe sneaks some, but we have a system where I will ask where they are and if they don't answer they're in trouble. It's time for the corner, which none of them like, and that's how I keep track of the children. Also, when they're on the computer I know where they are because the computer definitely makes noise that you can hear all over the house.
It was real funny because when I started on the adoption process with my wife, one of my co-workers said, "Oh, you're getting a seeing-eye kid [groans]." In a way it's kind of true because when we're looking to pick up stuff my daughter will show me where the thing to pick up is. When I'm trying to pick up the living room, she has to find it herself. That's one where I'm not real good at.

As far as teaching the child about blindness, I will touch briefly upon this. The first time she knew about blindness was about three or four years ago when I took her to an NFB convention and she wanted to know what those pages with the bumps were. And so I'm explaining it's Braille and she's reading it with her hands, and goes, "Bumps hurt." And I go, well you have to learn how to read it and read it correctly. I also had her at a Sligo Creek Chapter Meeting, and she had this cane and she was pretending to walk with it, and I didn't know whether to freak out or to say, "Okay, that's how it's done." I think I talked to her about sometimes that's appropriate and sometimes it's not. So, that's pretty much my remarks.

Curtis Chong: Thank you Shawn [applause]. Bernice Lauder is the Mother of Raymond, Ryan, and Rachel. Is this deliberate, Bernice? Naming all your kids with "R"? Well, you've done it.

Bernice Lauder: First of all Mr. Chong must know my children because he put sneaking around in there. I'm sorry to say that Miss. Rachel Lauder is more prone to do that then the boys. Now, I would like to touch on some other things like homework. If your first child is a boy and you don't have anybody around to help you, when they go to kindergarten it is hard. You have to find somebody or try to get them to remember what they're supposed to do because we did have homework in kindergarten. I used to go next door and ask the lady whose kindergartner was in the same class as Raymond what they had to do, because I knew he couldn't remember it. That does get easier because if you have a second-grader, you can get them to tell you what the kindergartner's homework is. And we were blessed with a little girl who was a second-grader next door. She liked to play school and she liked to be the boss and she loved to read also. So, she would read notes that came home from school that Raymond couldn't read.

Now, as far as making checks out, I think we have to be very careful. Some of us go way too far the other way and not let our children do anything because we don't want people to say, "You're so dependent on this child." Or, "Boy, you really have a good guide." And, I think sometimes we go so far the other way in not depending on them. Actually, they need to learn some skills like finding things in the supermarket or learning how to balance a checkbook. Now, my daughter, I pity her husband when she gets married, because she does know how to balance a checkbook and she's very tight-fisted. But, my oldest boy is afraid of the checkbook and yet on the other hand he'll read anything if I ask him to but I have to ask him. Whereas Rachel says, "Oh, do I have to read all that?" Or she'll say, "Oh, you didn't want this mail anyways." Which most of the time I didn't, but I had to get on her the other week for that. I told her she wasn't my mother, and she shouldn't edit what I read. Give me the choice of throwing it out or keeping it. But we do tend to get a lot of circulars and things that we don't want. Still we have to be the ones to make the decision about it.

As other children's attitudes about my blindness, or Raymond's blindness, the subject has never come up very much. However, I remember that the day we launched Hank Decker off at the Inner Harbor. I brought a little boy with me and he said he'd never seen so many blind people in his life, and it was kind of scary to him I think, but I really haven't had a problem. One time this boy named Fidel (whose in jail by the way right now) [laughter], said he'd love to be my child because he could get away with this and that. But my boys told him that wasn't the case. Mommy gets on us and stuff. I've had so many children in my house and they don't discuss my blindness - not because we wouldn't discuss, it's just that it never comes up. They don't think I can't do anything. There is one boy that comes over whose always telling me where things are, but I know it. He's even stopped doing that. So, they're pretty good about it. Now, my Ryan got in a fight in school because he said somebody told him his mother couldn't cook because she was blind. And he said that wasn't so and one thing led to another and they both got suspended [laughter].

I don't know if I've been any help at all. I think that we do have some problems that are specific to us sometimes, but I don't think that we have any more or less problems with sneaking, or stealing from you, or disobeying than any parent does.

Curtis Chong: Thank you very much [applause]. The next person we're going to bring up here is the First Lady of the National Federation of the Blind. Give a real warm welcome for Pat Maurer [applause].

Patricia Maurer: When Dave was small, I told him "Go pick up your shoes." He was like three or something, and I'd walked over them ten times by then. And he said, "Mom, it's okay you can do it." And so I thought, how many times has this kid heard me say to people, "You can do this." And so, he was saying to me - it's okay mom, you can do it. And I said to myself, well I appreciate the encouragement, but I really wish this kid would pick up his shoes. I was hoping for another lesson so he trotted off and picked up his shoes.

When the kids were smaller they had a babysitter and we also had a driver that took them back and forth to school. The women that took them back and forth to school had kids of her own, the same age as our kids, and we still keep in touch with them. On the weekends sometimes or the evenings, she would suggest that the kids go with them and do things, and suddenly my kids were going to the movies once a week, and they were coming to me for money to go to the movies. I thought, this is quite nice of her, but I'm going to go broke with this movie project. So, I looked into it a little bit, and I said to Dave, "Why is Ms. Sharon taking you to the movies all the time?" He said, "Oh, she wants to." And I said, "Why does she want to? I know you guys are great kids, but why does she want to?" He said, "She thinks we never get to go to the movies." She thought because Dave and Diana's parents are blind, they didn't go to the movies and they didn't drive. So, the kids never got to go to the movies. And here my kids had a weekly ticket to the movies. They were really enjoying this until I got into the situation with them.
Diana was a little kid who didn't really care much about her clothes - this has definitely changed now that she's fourteen - but when she was small she didn't care whether things matched. She didn't care pretty much about any of it. And I would go to work a lot of days before the kids would go off to school so that the babysitter was in charge of helping them to get ready. A lot of times they'd get ready before I left, but by the time they left, they'd change clothes a time or two. And one time I got a note from the teacher which said - did I know Diana's socks didn't match? And of course I didn't know. I guess I might not of known whether I'd been there or not been there unless someone had mentioned it to me. I didn't really regard it as a big issue, but we did work on it. Later on, just very recently, the issue with fashion is a different issue now that Diana is fourteen. I had someone working with her to pin up some skirts for school. She wanted them one length and I wanted them another, and she got them all set and then I decided to check them out and we had to bring them down a little bit. I'm sure Diana will figure out how to get those skirts shorter anyhow.

The last story that probably many of you are familiar with already is one that Dave actually brought up just today. That's the story about when Dr. Maurer and some other Federationists went to visit Mrs. Bush. The other Mrs. Bush, the earlier Mrs. Bush, some years ago. Dave was very proud of this. He went to his school and he said to his teacher, "My dad is visiting the first lady." He was in the first or second grade. And she said, "That is not true. You should not tell stories like that." And she punished him for saying that his dad was visiting Mrs. Bush. Of course his dad had been visiting Mrs. Bush, and the idea that the teacher had was it was impossible that his blind father would be visiting Mrs. Bush, so he was punished for it. We worked on that with the school. I don't know if there was a lasting effect, but there was a short term effect I suppose.

I think there are lots of things that parents can do to help with their own kid's attitudes. Living normal lives is certainly one of those and we all try to do that as blind people. But, like Bernice was saying, you've got to involve your kids with other kids and their activities, so you have a lot of kids over. When you have kids over, and you feed them, and they stay overnight in your house, they get to know that you live your life pretty much like anybody else. When your kids want to go places, go with them to the movies or wherever else they want to go. When they're teenagers it's harder to have a chance, but every once in awhile you'll get to go along. And you've got to do that as parents, as much as you can, so that your kids know that you enjoy the same things that they do. Go into the schools so that you can talk to the teachers, and to the kids. I've made it a regular practice of talking to the kid's classes as much as I could over the years, so that the parents and the teachers and the kids would all know me and know that blindness was not a big deal. And, Dr. Maurer was in the Scouts (I would have never have been able to be a good scout leader) but Dr. Maurer was in the scouts and did a good job with that and that helped the boys and the scout leaders to know. All of these things are important to living normal lives as blind parents and with sighted kids or with blind kids.
Mr. Chong, I appreciate the opportunity to have a couple minutes, and I encourage the new parents to have a great time with it. I certainly am. Thank you very much [applause].

Curtis Chong: Thank you, Mrs. Maurer. When my daughter was seven, I went to talk to her class. That was when I was still liked by my daughter [ laughter]. They say that when your child is sixteen you're pretty dumb, and by the time they get to be twenty-one, you get to be smart. But, one of the more interesting questions I got in that second grade class was, "How do you know when your food is poisoned [laughter]?" As soon as they asked that question I sortof keeled over and said, "That's how you tell." Anyways, let me introduce Gary Wunder, who is the Father of Missy.

Gary Wunder: Well I don't know that telling school stories has anything to do with the topic I've been asked to talk about. Nobody can resist telling a story about their daughter and school. So, I went to school with my daughter because she said some people there didn't think her dad was blind, and didn't think that dad's could be blind people, and she thought that was really stupid and would I come and help. This was when she was younger. Now she'd prefer I not go around the school at all [laughter]. So I went and I did a presentation that I thought was pretty good and I came home and Missy came home on the bus, and I said, "So, Missy how was it?" “How was what?” “How was the thing at school?” “Oh it was alright.” “Well, did everything go okay?” “Oh yeah. Except Stephen - he kept saying you weren't blind, but I hit him and now he believes [laughter]. This is my dainty little girl, "I hit him and now he believes."

When the question comes up about 'what should you tell your kids about blindness?' Maybe my kid is different from everybody else's, but it doesn't ring to me that you can tell your kids much at all about blindness. My kid is not interested in lectures from me. Words are just words, and the philosophy that I have about my blindness may be meaningful for me, it may be liberating to me, I may be able to make other people stand up and cheer about it, but for Missy it's all in the action. And it just doesn't make any difference to her what I tell her. Except that if I manage to get some words in they darn well better be consistent with what she sees as my actions, because that's what she's going to judge. I think that you know that you've done a pretty good job of raising your child when they encounter somebody who says, "You probably take good care of him" and your kid goes, "What, you've got to be kidding." Or you walk away and your daughter says, "What's with him, Dad?" You don't let people be confused about who is the parent and who is the child. And make certain that your child knows that you don't expect them to be the parent.

I probably go very far the other way from what has been described here. Missy makes out a check for me only if Missy has waited so long that she needs money for something. Why? Because reading mail is not Missy's job. I pay somebody to read my mail. Now maybe some of that is volume. I have too much mail as the President of the NFB of Missouri to be asking Missy to read my mail, so I get plenty of it. So, Missy doesn't read the mail. Missy doesn't make out the checks. Oh for god sake, Missy doesn't balance my checkbook. I balance my checkbook. And again, it isn't that I don't want to teach her the skills - she does know how to balance a checkbook - but that's because she has a checkbook, not because I have one. I think that while there's no magic script that you can use, that you can memorize, to tell your children about blindness and give them the information you want them to have. Truth is that they will give you little windows of opportunity when they ask you questions. When they experience things in the world that they don't quite understand. When they do that, drop what you're doing right then and take that little window of opportunity because they slam it closed awfully, awfully, quickly. That is at least my experience with it. I love to talk with my daughter a whole lot more than she loves to talk with me these days.

Curtis Chong: Don't worry she'll grow out of it.
Gary Wunder: Yes. I think that's really all I have to say about it. If you wanted a good explanation of what parents should tell their kids, we probably ought to have a panel of the children and they could list our shortcomings and we'll all be the better for it. Thank you.

Curtis Chong: Now, I was very happy. My daughter is now twenty-three. She's a programmer at Target - following in her dad's footsteps I suppose. That means one day she'll be as grumpy as I am when she grows up. But, last summer she took me to go up tandem skydiving. And she learned enough about discrimination - partially because of the amusement park business, which some of you may know about in The Monitor where she was involved in them not letting her ride the roller coaster - they made her ride with me. Before she actually sent me to the school, she talked with them about the fact that I was blind. And wanted to make sure that it was going to be okay with them, and they weren't going to cause any trouble because she did not want herself to be embarrassed nor me on an outing that would otherwise be a terrific experience, and I think in that sense she was very cautious and right to have checked because she knows that lots of people have pretty dumb attitudes about blindness. And if that's all I've ever taught her in life, I think I'm doing pretty good. So lets have a big hand for all these fine panelists [applause]. Thank you very much.