Kay Nash's Story

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Kay Nash's Story

PRB: I’m Patricia Ressler-Billion. I’m 58 years old. Today is April 16, 2007. We’re in Bronson Park in Kalamazoo, Mich., and I work at Residential Opportunities, Inc., which is an agency that serves Kay Nash’s son.

KN: And I’m Kay Nash, and I’m soon to be 88. Today’s date is April the 16th, ’07, and we’re sitting in a big van, located in the central heart of Kalamazoo, Mich. I’m the parent of the young man that we’re going to discuss, who has Down’s syndrome.

PRB: You have lots of children, and we’d like to hear about that, but tell us about Tom first, would you, Kay?

KN: Well, when Tom was born, he was a Down’s syndrome, and neither my husband nor I ever had any idea what Down’s was, and we were told by friends and relatives, “For goodness sakes, put him in an institution. He’ll ruin your family,” which was the theory, I’m afraid, so many, many years ago.

PRB: When was that? How old is Tom?

KN: Well, he was just four months, and so he was placed at Fort Custer, which at that time was the place where any child with any kind of mental or physical deficiency went.

PRB: How old is Tom now?

KN: Tom is 46.

PRB: So that was a little while ago.

KN: Mm hm. And he was there for a while, until they closed Fort Custer, and then he was shifted over to Coldwater. And then Coldwater was closed after about a year and a half, and he went into assisted living houses, because by that time, my husband had died and I started to teach, and I found that I couldn’t take care of – he had a younger brother at that time, and there were older children around and I got a job to teach, and I taught for a while, and so he was in two residences until he managed, thankfully, to get into Hoard Manor. And then it was wonderful, because he went to Kennedy Center, where they taught him a bit of a trade, and then he went from there to McKercher workshop, and they found him all kinds of jobs, one right after another, all of which he did quite well, but he’s been handicapped because he has no verbal abilities. And so, we took him to Ann Arbor, to the clinic, to find out why Tom wasn’t able to vocalize words, and they said there were too many folds in the back of his throat, and he never would be able to pronounce long words. And now, if you want a funny story, I’ll tell it to you.

PRB: Okay. [laughter]

KN: Okay. For all these years, he’s never been able to manage a two-syllable word or longer and I was aware of that. For instance, if you’d have a word like “watermelon,” he’d say “water,” “wah,” and expect you to know that he meant “watermelon.” And so it had been a long time, and just this past summer, he was home, which he does, he comes home for weekends, and I made what I thought was a fabulous meal. [laughter] And I said, “Tom, how do you like the meal?” He said, “Fine.” I said “Tom, how ’bout that salad?” And his eyes just twinkled and he looked at me with the biggest smile, and he said “Aw-ful.” [laughter] That’s his first two-syllable word in 46 years! Can you imagine? [laughter]

PRB: And only a mother could love, right? [laughter]

KN: He’s funny. So, anyway, he’s been quite a good entertainment, and I may say he’s been wonderful for the family. He really keeps the family together. The other children live on the East Coast, West Coast, Texas or Minnesota – all over, but we get together for Tom.

PRB: Wow.

KN: Yeah, it’s wonderful. So all these people that say, you know, “Put him away, put him away. You don’t want to be bothered with this child, he’ll ruin your family,” that’s ridiculous! They just draw together.

PRB: At the time, which was forty-some years ago, how did you know that Tom had disabilities?

KN: Well, the doctor immediately said he’s Down’s syndrome, and that doctor recommended that we put him in Fort Custer, and then family members, who did know about Down’s and we didn’t, said, “Oh, it’s so bad and they get spoiled rotten, you know, and they demand your entire time, and you just – it will drive the rest of the children out of the house and they won’t want to be there because they’ll be afraid they’ll have to end up caring for him.” And it’s been just exactly the opposite! 180-degree turnaround.

PRB: What did your mother’s instinct say when all those people said that to you?

KN: Well, I had so many children and I didn’t want them hurt, and so I was willing, because Fort Custer’s just a couple miles away and I could go to Fort Custer every weekend, pick him up, bring him home. As tiny as he was, I took him out for a ride to Battle Creek on a Sunday afternoon and then, in the middle of the week, if I could, in between times, I’d go over and see him. So it was not a horrendous separation.

PRB: Wow. To have your baby go somewhere else. And what was here if you had kept him home? What would have been here to help you?

KN: It wouldn’t have been a problem, really, we just were following orders. I think when you’re not sure and you’re talking to professional people, you let them guide you, which is what we did.

PRB: You had a lot of trust.

KN: Oh, yes. And I knew that we could draw him out if necessary. This wasn’t a life commitment. They were caring for him while I was caring for the other six …

PRB: Wow.

KN: While Daddy traveled. He was only home on weekends. [laughter]

PRB: My. What was Fort Custer like?

KN: It was wonderful. You know those are leftover barracks from the first or second World War.

PRB: Second.

KN: Yes. And they were really quite efficient at the time. It was nice. They were nice and clean. They had a lot of help, and I knew that Tom would be happy because he had a beautiful crib and we’d make sure that he had all kinds of extra special. Every grandmother was making blankets for him [laughter] so he made out okay.

PRB: Where you able to talk to the staff?

KN: Yes. Every weekend I’d go over and know them. So it was nice.

PRB: Wow. Would they let you in in terms of what was going on?

KN: Right, definitely.

PRB: Did they let you be a part of things with Tom?

KN: Uh-huh. Because I immediately had another baby, so I was pretty busy with little Dick, who was just 12 months younger.

PRB: That was an act of faith, too, wasn’t it? To have another one?

KN: That’s because you’re Roman Catholic. That’s what that is. [laughter]

PRB: There’s faith there, yes. [laughter] My. So you’d go and you’d pick him up? You’d take him out?

KN: Oh, heavens, yeah. Heavens, yes. They didn’t have restraints in cars then, as they do now. I’m so aware when I see people put babies in and they strap the belt around them, and they’re so tiny and I think, why don’t you hold them like I did?

PRB: Oh, my, that’s right. You know, when you and another mom were talking a couple months ago, you talked about how it’s so common now to have a support group for this, or a support group for that. How did you all come together? There’s a very strong core of incredibly strong women, mothers. What happened?

KN: Yes. Well, I do think that there were people ahead of us, that had already had a nice group and included us. I’m trying to think of the name. There’s a house that’s named after them. And of course Mrs. Hoard had her babies, both of whom are retarded, and so she was involved in it and I got to know her. And that was very pleasant. And Kennedy Center was already established. I don’t know what its history is, how soon that started, but Kennedy Center was a big help.

PRB: Now why did it go from Fort Custer to Coldwater? What made that change happen?

KN: It closed. They closed Fort Custer.

PRB: Do you know why?

KN: I’m not sure, no, but I think perhaps more hospitals began to be aware of the need and they were more available in different areas of the state. So then, he went over to Coldwater and that was a much longer drive, and it was – the name itself turns you off. Coldwater?

PRB: Cold water?

KN: Right. You had the feeling they were a little bit colder. They didn’t care that much. [laughter]

PRB: Was it true?

KN: Uh-huh. I think it was. So we were only too happy when they said that they thought they would close that area down of the Coldwater Hospital. So we came back to town.

PRB: How big was Fort Custer? How many children? Was it children and adults or only children?

KN: No. The area that I knew of was only children. It was just with little folks.

PRB: Wow.

KN: Teeny tinies.

PRB: Oh my. And when they went to Coldwater, that’s a big place.

KN: It had everything under the sun.

PRB: That’s a big place. That’s a huge place.

KN: Mm hm. Really.

PRB: Do you think it’s ironic that it’s a prison now?

KN: I don’t think I knew that. Is it?

PRB: It’s a prison.

KN: For heaven’s sakes!

PRB: Did it feel colder?

KN: Well, yes it did. And of course, I didn’t know the people. And I couldn’t get over there as often because it was further away, so I didn’t get to know them as well. So he was only there about a year and a half, but he had been at least three, four years at least, somewhere I have a record of that …

PRB: At Fort Custer, you mean?

KN: Yeah, at Fort Custer. I can see here, it was 11 years, no, okay. And then maybe only less than three over at Coldwater, and then he went into two private residences here in Kalamazoo, and they were both very loving families. And it was very nice, and that was comfortable, like regular family, not just somebody that was doing a job.

PRB: When Tom was transferred to Coldwater, you said how it was different for him. How was it different for you, besides that it was so much farther? What did that do to you?

KN: You know, I was busy, but I really felt something would be done eventually, and they encouraged me that it would, and then they brought him to town.

PRB: You are a woman of faith!

KN: I think that there’s something kind of interesting in the reason now that Tom doesn’t like cats. When he was at Fort Custer, I think there were feral cats, and they were out there. He just really has – he goes into a small panic when he sees a cat coming toward him. And I think they roamed around over there in that area. Isn’t that odd?

PRB: Well, now, I had heard that there were rats there.

KN: Well, there could have been. There weren’t in Tom’s building.

PRB: That’s really good to hear. [laughter]

KN: Oh, no, it was a lovely building. It was in nice condition. Maybe it occurred later on, after.

PRB: Well, you know to be a mother and to see your child, you had to have a good place.

KN: Yeah. Oh, I was always quite content.

PRB: Oh, that’s good. And so, what prompted coming out of Coldwater? When was that – do you remember what year that was?

KN: Well, let’s see here. That should have been April of ’75. And then he went to a residence for three years. And then he went to another – that family, I think they got a divorce [laughter] and so they moved him to another residence, and he was only there a year before Hoard Manor opened up, and that was marvelous.

PRB: Oh, that’s right. And so at the time, there weren’t any mental-health-funded residential programs.

KN: Right.

PRB: So when Tom was born, there was nothing in the community –

KN: Nothing.

PRB: Except people telling you he needed to go somewhere else.

KN: Right.

PRB: So by the time he came out of Coldwater, what was different in the community in Kalamazoo?

KN: Well, an acceptance of them. And of course, you openly talked about having a Down’s, which was very comfortable. I feel sorry for the people the generation before me, who hid them in the closet and never admitted that they even had a child. The child didn’t get out of the house! You know, that was terrible. But we’re getting a little more sane, I hope.

PRB: I hope so, too. We’ve really seen, for you, even though people recommended Tom go away, you could talk about it is what you’re saying.

KN: Oh, my yes. That was the joy of it. And immediately found a lot of people in town, and this young man who was head of Kennedy Center, Bill Olman, a fine man. He just made everyone comfortable. And then there was another man, the one that – Bill was at ROI. Richard Pattison. Actually he was at Kennedy Center. He was terrific. And they had a young man that taught the children a trade, and his name was David Clark. And he taught Tom a lot of things that Tom has used right through his life. Even how to turn pages. That seems silly, but he turned them without creasing them or folding them, and sometimes you watch a Down’s child, and boy that book or magazine is a mess by the time they’ve gone through it. [Laughter]

PRB: The things you wouldn’t think of, huh?

KN: Right.

PRB: When Tom was born, and the doctors told you especially he needed an institution, what did they say about his potential?

KN: You know what the first doctor said to my husband? “Will you be happy with him when you get older, he’ll bring you your bedroom slippers.” And I thought my husband would get up and choke that doctor. [laughter] You know, that is so demeaning, to have a future that that’s all that child could accomplish? Bringing your bedroom slippers when you might need them in your old age?

PRB: Must’ve broken your heart. What’s Tom doing now?

KN: At the moment, he’s working for ROI two mornings a week. Right? Right. He has such a good heart, he has left the best job in the world when he worked for, what was it, the State? Federal Building?

PRB: Federal Building.

KN: Oh, man. He had five mornings a week, and he was making all this money …

PRB: He was making standard wage for the Federal maintenance people, right?

KN: Right.

PRB: And what happened?

KN: Well, some people kept coming to the back door, and that was Tom’s position to do his janitor work. And, being in a Federal Building, you were supposed to go in the front door, and they do everything you would do as if you were getting on your airplane. They checked your shoes, they checked whatever you had in your pockets, the whole bit, but these people would come to the back door, and they’d say, “I need to use the bathroom,” or “It’s raining, I gotta get in,” and Tom would open the door. So, three times they warned him and the fourth time, he lost his job. And I said, “Why didn’t they put him somewhere other than near the door?” You know, there must’ve been some other dirty places that needed a janitor! [laughter]

PRB: Well, being fired because you’re too nice. That’s a tough one.

KN: That’s his problem. He is really so nice, and anticipates people’s – you know, he gets your coat for you, and he makes way for you if you’re walking somewhere, he makes sure you have plenty …

PRB: There’s a lot of Kay Nash in Tom, I can see that.

KN: Oh, he’s just one of the group. [laughter]

PRB: Since he’s been back in the community, he’s gone to school.

KN: Yes.

PRB: And he’s gone from a group home to his own place, right?

KN: Yes.

PRB: How’d that go? What happened there?

KN: I think that assisted living is terrific, because he is so mild-mannered, he didn’t even try to express himself. Now, in a home, with assisted living, he really is trying to be understood. He makes a big effort. And, all of a sudden, he knows if he wants it or doesn’t want it. If he likes it, or if he doesn’t like it. He always just ate whatever was put on his plate and said nothing. Now, he’ll say no to nuts and no to candy, which is amazing, and I love it! He really has opinions all of a sudden!

PRB: So that “awful” about the salad wasn’t all bad, huh? [laughter]

KN: Yes, right! He really let me know he didn’t like that salad! [laughter]

PRB: So Tom has a roommate and they live in their own house, right?

KN: I wouldn’t want to call it a roommate. No, that upsets me a little bit.

PRB: Okay.

KN: The lower level of the house has a young woman who is retarded.

PRB: Okay, so it’s different levels. Okay.

KN: Yes, so it’s not a roommate.

PRB: Okay.

KN: She has the lower level, he has the top level. And she likes to call him her boyfriend, but there really is a very big distinction in ability, and Tom is aware of it, because she’s a bit temperamental. She’ll cry if it’s her turn to do the dishes, or she will sob if something isn’t quite right, and so I said to him the other day, “Tom, how do you get along with your friend on the first floor?” And he went like this. [laughter]

PRB: He does have an opinion! He does. It’s great.

KN: I thought, well okay, that’s good. I like that idea, because, then we don’t have to worry about this thing of boyfriend/girlfriend. I don’t want that to happen. I don’t really want to. He now belongs to a men’s group that goes out once a month, so he’s out with the men, because living in this house with just a woman, it’s logical that people are going to say they go together, or they belong together, and I don’t want that to happen.

PRB: What else does he do? Has he gone on any of the trips?

KN: Lots of trips. Yes, every time I go for a trip, more or less, I have him with me. And he went alone to Texas. I drove him to Detroit, and so it was nonstop to Dallas, where his sister and one of the brothers lives.

PRB: Wow.

KN: Yes, he’s traveled. He’s taken cruises up and down the Mississippi.

PRB: Nice.

KN: We have other parents with Down’s that we do things with like that. And we’re with a Down’s group.

PRB: He’s a bowler, right?

KN: Oh, my Lord, he’s in bowling, he’s in weight lifting, he does bocce, he does golf, and he’s a beautiful swimmer.

PRB: How wonderful.

KN: But all the time he doesn’t talk, you see, so we really don’t know it, but I keep him going. There are a lot of things – this is the era to live in. If you’re retarded, this is it. Because the government recognizes them, the community recognizes them, and look at how many are employed in your grocery stores. Every grocery store you go into has at least one retarded person. It’s wonderful.

PRB: Well, he has been fortunate in that he has you as a mother, who really keeps him going, too, Kay.

KN: Well, as I say, he keeps my family going, and I am appreciative. He really is a dream. And I also have a date. You know, some little old ladies don’t have anyone to go out to dinner with, but I always do! [laughter]

PRB: You’ve been really involved in his life and his services.

KN: I hope so, yeah.

PRB: How’s it changed, how have all the services become different?

KN: Well, they acknowledge the fact that you are there, and they’re willing to let you be a part of it, which is good.

PRB: Was Tom left out a lot?

KN: I think when he was in the group home, because of the major problems other people might have had. Eating problems, or walking problems, and he was quite fit. He kind of made his own way quietly. He doesn’t make friends really fast, close friends, but he’s nice to everyone he sees. We were at the Radisson, at that Zazios place for Easter, and he knew everybody at every table in that dining room! [laughter]. And they came over and talked to him and I might as well have stayed home!

PRB: That’s wonderful.

KN: Because he’s gotten around.

PRB: Well, that’s great. I would imagine, though, sometimes if you’re not the squeaky wheel, you don’t quite get what you need right away. But he’s been very persistent, as have you.

KN: And I think, maybe he is one of the people that makes it easy for staff, and staff kind of appreciates the fact that you’re somebody that isn’t demanding and isn’t temperamental, you know.

PRB: Isn’t going to hurt them.

KN: Yes, a couple of times, they’ve said, “Mrs. Nash, if you ever don’t want him to stay in the home, I’ll take him home and he can live with me.” [laughter] No way.

PRB: What about Tom’s future? What does he want and what do you like?

KN: Well, we’re trying very hard as a family to increase the endowment, so that ROI will always be there and Tom will always have a future with ROI, and the children are fortunately in a position that if anything goes wrong, they can be here by airplane within 24 hours, so it is a nice setup. And he made so many friends, you wouldn’t want to move him. I think he should stay in Kalamazoo, don’t you?

PRB: Well, it’s his home, right? He’s just like any of us. Don’t want to be plucked out, unless we really have to be.

KN: Right.

PRB: And that’s one of our goals, is to make sure that people are secure, and that there is a future – that they always have a place to live.

KN: Right. He feels that it’s his home, and now he has his keys. Oh, it’s just so neat. I drop him off and he takes his own key to get in. Oh, man. Big time.

PRB: You know, he showed me that key when he got it.

KN: Did he?

PRB: He walked all around the administration building. He came into my office and just went like that, and showed it to me. And he was beaming. So, he was speaking very loudly.

KN: He really understands and reacts much more than you think, because he’s not verbal. You know? And sometimes I’m kind of ashamed of myself when I think, why didn’t I let him do this or that, because I think he really was capable of doing it. Now, we’ve got to teach him how to do yard work. [laughter] Now that he’s in that house, I want him to rake, and I would like him to pull the weeds, and keep it looking neat on the outside, because I think they have help with the cleaning on the inside pretty much. He does his own laundry, and he does help with all of the dishes, and that kind of thing.

PRB: Did you ever think that would happen?

KN: It never, but it’s – he’s capable.

PRB: Does he cook his own meals?

KN: They do not allow that. ROI doesn’t allow that. They send someone over from Hoard, and they supervise the meals, which is good, because he’s diabetic, and they watch what they eat. That’s why he’s keeping so nice and slim.

PRB: Great.

KN: Very careful, and I’m grateful for that, because I would let him have a second scoop of ice cream there at my house. [laughter]

PRB: That’s why sometimes staff can do that and families can’t. Oh, that’s great.

KN: It’s a big help. And then staff makes sure that he gets to the dentist, that he gets to the doctor, they check his eyes. They have someone that comes and does the toenails once a month for everyone at Hoard, so then they bring over the two from Stanton House, who also have their feet taken care of. What a deal. [laughter]

PRB: It sounds pretty good, doesn’t it?

KN: You almost wish you were Down’s syndrome, right? [laughter]

PRB: How about the rest of your kids? How did it affect them to have a sibling with disabilities?

KN: Well, I have unusual children.

PRB: I would imagine.

KN: They have a very warm spot for Tom. They’re very generous with their money, and they always come to visit with them. But I don’t think that they would care to have him live with them, because their lives are so busy. You know, I’ve got a doctor. I’ve got a lawyer. I have an interior director, I have, whatever. Their lives are so busy, they wouldn’t give Tom the attention that he’s getting from ROI.

PRB: And from you.

KN: Yeah, and that’s why I love it. Because he’s making friends daily. They are always there. And there are nighttime people. He’s just in love with that Mike Moriarty.

PRB: Oh, good.

KN: Fine man. He’s in the right spot, and the children will provide. And they’ll come and make him feel proud for being a part of their family. But I don’t think that would absorb him and keep him 24 hours a day, seven days a week.

PRB: Now where is he in the birth order of your family?

KN: He’s number six, and there are seven.

PRB: So there was quite an age range of your children when he was born.

KN: Twenty years between the oldest and the youngest.

PRB: How do you think that affected them? Having a sibling?

KN: I think it was an education. I think it was wonderful. Because they all all of a sudden know about a part of the world they never had. And made contact with. That there are people who are born without talent, and people who need help. And I’m happy about it.

PRB: Great. And you are an educator. Right?

KN: [laughter] Well, a few years, yes. When my husband died … I had to finish my degree because I went home to take care of a baby when my mother died when I was very, very young. So I didn’t get a degree until all my children were born and my husband had died. Then I got a degree in teaching and taught for a few years.

PRB: Wow, what strength you’ve had, really.

KN: Not really.

PRB: Yes. [laughter]

KN: I stopped teaching, because it reached that point where all these people couldn’t get jobs. They were graduating, young people were graduating with a teacher’s certificate, and there were no jobs available, and I said, why should I be teaching when you only make half of whatever they pay you because you’re getting – I got Social Security, and then that’s not fair to hold a job full time that some of these kids really needed. And so I stopped and it worked out all right.

PRB: Kay Nash, you are something. You really –

KN: Not really.

PRB: Yeah, really.

KN: I thought they were going to have need for pictures, so I brought pictures. [laughs]

PRB: We can scan them if you want to have them go with the CD.

KN: I think this one’s darling, don’t you think so?

PRB: That’s Tom.

KN: This one’s a cute one, too, much younger. But that one has so much personality.

PRB: Is that a school picture?

KN: Yes. That would have been at school at Kennedy Center, and he had a business card.

PRB: All right.

KN: How about that? [laughs] They’re fun. Yes, he’s been a lot of fun for all of us, and we’ve all gotten an extra education having had him.

PRB: Just maybe to close, what would you say to mothers now whose child is born with disabilities?

KN: I think really that they don’t know, but it’s really a treasure. It really is. You just – life takes on a lot more meaning when you have a child like that. It really does.

PRB: Thank you.

KN: Thank you. [muffled sound] Enough already! Now I’m going home to eat my lunch.