Diane Morrow-Kondos and Steve Webb

[00:02] DIANE MORROW KONDOS: My name is Diane Morrow Kondos I'm 63 years old, and today is Wednesday, April 13, 2022, and we're in Tulsa, Oklahoma. My interview partner today is my husband, who is Steve Webb.

[00:16] STEVE WEBB: Hi, my name is Steve Webb. I'm 67 years old. Today is April, April 13, 2022. We're in Tulsa, Oklahoma. I'm here with my wife, Diane, and.

[00:29] DIANE MORROW KONDOS: We'Re going to talk about my brother today. And that may seem like an odd topic, but my brother is four and a half years younger than me, and he is intellectually disabled. And my relationship with my brother has impacted almost every area of my life. My relationship with him has affected who I became as a person, how I treat other people, my choice of careers, my choice of a life partner, and the way I parented my children was directly impacted by my brother.

[01:09] STEVE WEBB: So why do you want to talk about your brother?

[01:12] DIANE MORROW KONDOS: Well, because I think as a sibling, our role is so often overlooked. Everything is about the parents, and yes, they do have a lot of struggles, but the siblings are the ones who have the longest lasting relationships with people with intellectual disabilities. So I want to just bring awareness to the special role that siblings have. And as always, I try to advocate for my brother and for everyone else with intellectual disabilities.

[01:43] STEVE WEBB: What was your earliest memory of David?

[01:45] DIANE MORROW KONDOS: Oh, my goodness. My earliest memory is just burned into my memory. I was only four and a half, and I had gone over to my neighbor's house while my mother went to the hospital to have my brother. And the phone rang, and my neighbor handed me the heavy black receiver like we had back in the sixties. This was 1963. And I heard my dad's voice, and he said, diane, you have a baby brother. And I can't tell you what I said because I was in shock. I assumed we were going to have a little girl. I desperately wanted a baby sister. I had two older sisters, and I just assumed that my family had girls. So I was very upset that I had a brother instead of a sister. But, of course, little did I know that my brother's gender was going to be the least of my concerns as the years went by.

[02:38] STEVE WEBB: When did you find out he was intellectually disabled?

[02:42] DIANE MORROW KONDOS: Well, my mother began suspecting there were problems in the first year to two years, he wasn't hitting the developmental milestones like my sisters and I had. And she kept bringing it up to the doctors, and they kept dismissing her concerns. They told her that girls develop faster than boys, and she was just being silly, that there was nothing wrong. And he didn't crawl when he was supposed to he didn't walk when he was supposed to. And by the age of three, my mom knew in her gut that there was definitely something wrong. He could say a few words, but that's all it was, mama and Dada. And so she pushed the doctors, and they finally admitted that, yes, he was mentally retarded, which was the actual medical diagnosis given at the time of 1963. Now, we didn't know what had caused it, and that's not that unusual. Even now, about half of people with intellectual disabilities, we don't know the cause. The main three causes, the main three diagnoses are fetal alcohol syndrome, down syndrome, and fragile x. But half the people don't fall into any known category.

[04:02] STEVE WEBB: How did that change your family and you specifically?

[04:05] DIANE MORROW KONDOS: Oh, it changed our family drastically. My sisters are older, and they refer to that time as the before and after of happiness in our family, and it created so much tension. This was 1966 by the time he was diagnosed, and there was little to no help. The doctors gave her the diagnosis, but didn't give her a roadmap of what she should be doing and how she should seek help. So my mother was a very intelligent, intelligent, strong woman. She had to figure it out every step of the way. But my dad wasn't totally on board, because this was the son he had longed for. And my brother looked normal. I put normal in air quotes because what is normal? But my dad wasn't on board with it, and he was in denial for most of his life that anything could be wrong with David. He kept thinking we could find a cure, that if he could only get speech therapy, would be okay. So my mom didn't have my dad to rely on, and her own mother didn't believe that David was intellectually disabled. She was born in the late 18 hundreds, when it was still considered intellectual disabilities were considered a punishment for the sins of previous generations. So my mother didn't really have any support, and there was a lot of tension in our house, and my role became a. To be the peacemaker, to be David's protector and his teacher. Now, nobody assigned me that role, but I took it upon myself because I saw that that was the source of stress in our house. And so I spent hours trying to teach him how to talk by giving him m and M's every time he tried. And I took him everywhere with me, even when I didn't want to, I did, because I just thought that's what I needed to do. And by the time I was ten years old, I had a raging stomach ulcer caused by all the stress.

[06:15] STEVE WEBB: So when you left home for college, how did it feel to leave David behind?

[06:20] DIANE MORROW KONDOS: Well, I remember standing by the family sedan, packing my bags in the trunk, and I felt so guilty for leaving David behind because his life had revolved around his sisters, and I was the last sister to leave home. And even though my parents were wonderful parents, he was going to be the only kid left. And he was used to doing everything with me and having activity around, and I felt horribly guilty about leaving him behind. But then the other side of me was secretly thrilled. I could not wait to leave for college. And when I got to college, I just felt this incredible sense of freedom. It was the first time since David was born that I didn't have to take care of other people. And it was just this. I couldn't believe it. Other college kids were going out, getting drunk, but I didn't need to drink because I had this. I was drunk on the freedom of not having to take care of anybody else for the first time. And I just. I found myself going home less and less frequently. And when I did go home, I realized I didn't have the patience anymore to sit and listen. It would take sometimes 2 hours for him to get across one thought because his speech was so delayed. And when I was growing up, I didn't think that much about sitting there for 2 hours trying to help him get a thought expressed. But once I'd experienced the freedom of college, I didn't have that patience anymore. And so that our relationship began unraveling, I imagine.

[08:10] STEVE WEBB: Well, talk about how it impacted David when he aged out of public schools.

[08:14] DIANE MORROW KONDOS: Well, in Oklahoma, you're allowed to stay in public schools until you're 21. That doesn't mean the schools want you to, because it costs them money. But David did stay until he was 21. And when he graduated, he didn't graduate to college or to a job like most people do. David graduated to the couch. There was nothing for him to do. There were no programs. There was no job. He had nothing to do. And by that time, my father, who was 15 years older than my mother, had retired. So he was home, and my mother had gone back to work. So there was my brother. He was 21, so that would have made my father, like, in his seventies, because my dad was 53 when my brother was born. So there was my father in his seventies, and my brother with intellectual disabilities, just at home all day long with nothing to do. And that is when David began getting violent and extremely unhappy. And looking back, we know now that that's also the age when schizophrenia symptoms normally start appearing. His late teens, early twenties. So we had the combination of David having nowhere to go and nothing to do and the beginnings of schizophrenia. So his violence, he'd always had a lot of acting out, aggression. But when he was young, we could control it. We could physically control him. But as he became older, he was very strong and he was very athletic, and we couldn't control him anymore. And by that time, I had moved back to Tulsa. I'd graduated from college, moved back to Tulsa, and was working. And I tried really hard to help my parents because it was obviously they were at the end of their rope. David never hit them. He mostly injured himself and me and other people, but never my parents. But it was becoming obvious that this situation couldn't continue. The one night that it really came to a head for me was a night I was babysitting my brother, and my parents had gone out to the movies, and this was before cell phones, so I had no way to get a hold of them. And I made the critical mistake of telling my brother no about something. Don't even remember what it was. Probably food related. Well, he went ballistic and started beating me up. And the worst punch was he punched me really hard, right in the eye. And I managed to escape and lock myself in the bathroom, which is where I stayed until my parents got home. But the next day, I had to go to work. I worked at the hospital. I had to go to work. And I was so embarrassed. I didn't want anybody to know what had happened. But of course, working in a hospital, people are very aware of domestic violence situations. And everybody assumed that I was the victim of abuse, and I was the victim of abuse. But what no one ever suspected was the abuser was my own brother. And after that incident, I just couldn't be alone with my brother again for quite a while. And after he beat up another family member even more severely, my parents finally realized they had to get help. And that's when they began seeking a place for David to live.

[11:58] STEVE WEBB: How would David's life have been different if his iq had been higher, say, 70 instead of 54?

[12:04] DIANE MORROW KONDOS: That actually would have been much worse, because 70 is the cutoff. And luckily, David's iq is in the low fifties, so he's able to get services. And like I said, he also has a comorbidity of schizophrenia and obsessive compulsive disorder. And when we found that out, how we found that out was when he was living at this other home. He was out on a job one day with the sheltered workshop, and he beat up a total stranger, and he was arrested for assault and battery. And when he went before the judge, it was obvious that with an iq of 54, 53, 54, and not even being able to talk, there was no way he could be held. Criminal, irresponsible. But the judge did sentence him to 90 days in a psychiatric facility. And we were all devastated. But this was the beginning of getting the help he needed. That is when he began getting the proper medications and the proper treatments, and that began a very long path to him finding contentment.

[13:18] STEVE WEBB: Tough road.

[13:20] DIANE MORROW KONDOS: Yes. And if you are mentally ill in America without the co diagnosis of intellectual disability, then it's really, really difficult to get any services. So I try to remind myself that I'm grateful that David gets the services he needs because he does have a low iq.

[13:41] STEVE WEBB: So you mentioned a little bit about your parents decision to find David a place to live. Talk a little bit more about that.

[13:48] DIANE MORROW KONDOS: It was so hard for my mom and my dad also, but mostly my mom. But the first place he lived wasn't good. And that's when he was going through all the self harm. And one of the worst self harm incidents occurred during that timeframe when he punched himself in the face so hard that he detached his retina and they couldn't save his vision, and he lost the vision in that eye. But we found another home after that where he was a little happier, but still not great. But then eventually, my mom, like I said, she was a powerful advocate for him. She found another home that was a great fit for him, and they were willing to work with his aggressive behaviors. So through a combination of medications and behavior modification programs, they were able to transform David's life. And he hasn't hit anybody or himself in over five years. So that's a huge success.

[14:56] STEVE WEBB: That is huge. I didn't realize it had been that long.

[14:58] DIANE MORROW KONDOS: Yeah, every year when I go for the meeting and they said he's had no incidents of violence all year. We just all celebrate. But he's in a great place now with people who really care for him and provide wonderful care.

[15:12] STEVE WEBB: Did your dad participate in helping to try to find homes?

[15:15] DIANE MORROW KONDOS: Oh, yeah, my dad tried. He did. But he just had such denial about David's issues. He was always trying to find cures. It was like oxygen therapy, speech therapy, some of those therapies David did need. But I tried, too. I used to go to prayer meetings to tent revivals and try to get him healed. And we all, you know, you hold on to that dream that maybe something will be the ticket, of course.

[15:50] STEVE WEBB: How did that all go? What was your relationship with him during those years when he was making the transition?

[15:55] DIANE MORROW KONDOS: Well, when I became a mother of young children, I did distance myself. I mean, I still saw him all the time because my parents brought him home for the weekend at least once a month, and they wanted me to bring my kids over all the time. And I love my brother. I wanted to see him, but he was also a danger, and he was very volatile and unpredictable. So I always had to keep my children very close to me. And I know that once you and I got married, you felt very protective about the children, too, right?

[16:29] STEVE WEBB: Absolutely. I always wanted to be ready to step in at any moment, never had to.

[16:34] DIANE MORROW KONDOS: But I was always prepared, and that's good. So I didn't help my parents during those years. I, as a mother, my main job was to protect my children. That's what I did. And I didn't really help my parents. My mom was kind of on her own. My mom and dad were on their own.

[16:55] STEVE WEBB: Your mom was a good caregiver.

[16:57] DIANE MORROW KONDOS: She was an incredible caregiver to a degree that she could never say no to my brother. And that created its own set of problems.

[17:06] STEVE WEBB: Of course, when your mom was dying, I remember her main concern was what happened to David. Who would ever love him like she did? How did taking over as his guardian change your life?

[17:18] DIANE MORROW KONDOS: Well, first I want to talk about when my mom knew she was dying, because it was a very unexpected diagnosis of pancreatic cancer just a few months after my father had died. Now, being 15 years apart in age, she assumed she'd live a lot longer, but no guarantees in this life. And so she got the diagnosis of pancreatic cancer, and her main concern was what was going to happen to David. He was already in a home where he was well cared for and loved. But my mom, she did a lot. She did. She was on the phone with him many times a day. She brought him home. She went up there taking him shopping and to lunch. She was super involved with him, even once he lived in a home. So who was going to do all that? And so I went to court to have guardianship transferred to me. That's what my mother requested that I do. And we were working on a really short time crunch here. Her diagnosis was she had a very short time to live, so they expedited the guardianship. And I tried to assure my mom that, you know, mom, I will take care of him no matter what, because a piece of paper doesn't determine that but why would she believe me? I'd really been very little help in the preceding 20 years. But I got that piece of paper. His home brought him to have one last conversation with her, and she died a few days after. And it. Yes, it was devastating to all of us. And that had been my brother's person his whole life, who he relied on. So it was a really tough grieving process for him. Unfortunately, his home recognized that and got him a special grief counselor to work with him.

[19:14] STEVE WEBB: So your mom was. I know I went to visit with you to his home a few times while David was there. And your mom was a rock star. She was well known there for everything she did for.

[19:27] DIANE MORROW KONDOS: Oh, at my brother's facility, yes.

[19:29] STEVE WEBB: Not just for David, but for everybody there.

[19:31] DIANE MORROW KONDOS: She did a lot for everybody. True.

[19:35] STEVE WEBB: Talk about the moment you realized you were going to have to find humor as a coping strategy.

[19:40] DIANE MORROW KONDOS: Okay. Well, after I took over guardianship of my brother. That was twelve years ago. That first year, I did nothing but go through the motions. I still had my mother's estate to deal with. I had all of David's legal issues, financial issues, and becoming his person. So it was stressful. I resented it. I didn't really want to do it. I put on a happy face every time I went to visit him. But then I'd get in the car and make that hour long drive home, crying the whole way home, because I didn't want this responsibility. My brother's a lot. I love him, but he's a lot. And one day he called me 22 times. And that may sound trivial, but I really didn't want to talk to him 22 times a day because remember, he has very limited communication skills. So it would be a conversation that would basically consist of him making demands for the next visit. Pizza, jelly beans, things like that. So when I started drawing some limits with him, things became better. I said, you can only call me once a day unless there's a problem. And then we started trying to find fun things to do together. I tried to remember the things we'd done as kids, and we started going swimming together and playing basketball. And that brought some of the joy back and some of the fun back. So a combination of boundaries and finding the fun again helped me immensely. I hope it helped him. But the one day that. It was about two years after my mom died and he and I were at an ice cream store, because ice cream is one of his passions. And my brother was dressed in overalls like he often is. And instead of wearing one cowboy hat, he was wearing two, one on top of the other, because if one is great, then two is even better. And he had, of course, made a horrible mess of ice cream all over the place, and we cleaned up the best we could. Then I turned around, and we were leaving, and I couldn't find him. And I looked all over, and there was my brother, my 50 something, overweight, rather dressed in overalls, with two cowboy hats on his hands and knees underneath the table. Because he has obsessive compulsive disorder, he has to pick up every piece of trash there is. And for just that brief second, I was kind of embarrassed. And then I thought, no, you got to make a decision right here. You don't care what other people think. You might as well laugh at it, because you can't change it. And that's when I started using humor as a way to deal with what had previously been embarrassing situations for me.

[22:23] STEVE WEBB: Of course, you've talked about how you came to a place of understanding and forgiveness for your mother after she died. Tell me about that.

[22:31] DIANE MORROW KONDOS: Yes, well, my mom was wonderful. She really was. But I think anybody that has a child with intellectual disabilities, physical disabilities, chronic illnesses, anything that requires extra attention, the other siblings kind of get the leftovers. So I had always. I wanted her attention and approval so badly. And that's one reason I was such a good sister in the early years, was I saw that that might be the ticket for me getting approval from my parents, because David was the most important thing in their lives. Well, I never got that approval that I so desperately craved. And even after she died, there I was, 52 years old, thinking that maybe in all the journals she kept, there would be some mention of me. But there wasn't. It was all about David. So I decided I wanted to write a book about David and our relationship, and I went away to do it to a secluded writer's colony. And I spent several weeks sitting there, going through all of David's paperwork. My mother had kept every paper that ever had anything to do with David. So I was able to relive David's whole history through my mother's paperwork. And through that, there was a completely unexpected benefit. I found myself placing myself in her position more and more, and I. Although I could never know what it's like to be the parent, I began to have so much more compassion for her, and I understood why David had to be the number one thing in her life. She was like a triage physician. You tend to the person who needs the help the most. She had four kids. Three could take care of themselves. One could not. So that's a where her attention went. And through the process of writing this book and being his guardian, over the last twelve years, I have just come to a completely different relationship with my mother. One of understanding and forgiveness. And I wish, I hope, that somewhere she is looking down and seeing that David is living a good life now and that he and I are close and that things have resolved. It's been a very long road, but we're in a very good place now.

[25:04] STEVE WEBB: You really are. I'm impressed to see this. I'm impressed with the way you redirect David when he makes certain demands. But above all, I want you to realize that your mom would be extremely proud of you because you've done an awesome job being David's person.

[25:22] DIANE MORROW KONDOS: Well, thank you. Thank you very much. Want to say here, when you married me, my parents were alive and healthy, and David was just a very peripheral part of our lives. I mean, you probably never expected David to be so much a part of our lives. And how do you feel about that?

[25:41] STEVE WEBB: It didn't occur to me at the time, but it absolutely makes sense. Both your sisters were out of town, and you're the one that was the youngest and closest age to David, and you understood him. You were the caregiver for your parents, so it made sense that you did. I was always on board with anything we did with David. I love him. He's my brother in law, and that.

[26:01] DIANE MORROW KONDOS: Makes things a lot easier for me, the fact that you're so willing to be part of his life. And one thing that we've done in the last five years or so is we became part of a national group called Ainsley's Angels. And Steve and I are triathletes. And Ainsley's Angels is a group of runners that push people with disabilities in racing wheelchairs. And my brother, oh, my gosh, he loves that so much. And he especially loves it when I can't run. And Steve pushes him alone because they go really fast and he earns medals and he gets donuts and coffee afterwards. So he. I love the fact that you and he have bonded through racing together.

[26:45] STEVE WEBB: He enjoys the downhills because we can go pretty fast with that. With that cart on. The downhills.

[26:49] DIANE MORROW KONDOS: Yeah.

[26:52] STEVE WEBB: And he really. I think maybe he enjoys the donuts more than anything else.

[26:56] DIANE MORROW KONDOS: No, it's the metals.

[26:57] STEVE WEBB: But the metals. Talk about the metals and your episode.

[27:01] DIANE MORROW KONDOS: Oh, we were at night to shine, which is a prom for people with. With intellectual disabilities that's held once a year all over the entire world. And he was having a hard time walking down the red carpet with every step. He was wincing in pain. And I thought, oh, great, we're going to have to leave the dance and not be able to go, not be able to go to the rest of the event. But he got to the end of the aisle barely hobbling, and he never complains about pain. He has a really high pain threshold. But I sat him down and I noticed that his pockets were full. I said, david, what's in your pocket? Now, remember, he has obsessive compulsive disorder, and one of his things is picking up trash. So sure enough, the first thing out of his pocket was this moldy, green, half eaten hamburger wrapped in paper. I was like, oh, that's disgusting. But okay, what else is in there? He started pulling out medals, and it was like a magician pulling scarves out of their sleeve. The medals kept coming and coming and coming. He had jammed a every medal he had ever won into his pockets because he loves these races so much. And after he went off to dance pain free, I really started thinking about it and I thought, Ainsley's Angels is not just about the donuts and the medals. It's about being included in a community event. It's about when he's out there in his racing wheelchair and we're pushing him, people are yelling for him and cheering for him, and he feels included. And that's something that doesn't happen very often for people with disabilities, is to feel like they're part of the community and they're included, and that's so important.

[28:45] STEVE WEBB: He goes whoop, whoop when he yell his name.

[28:48] DIANE MORROW KONDOS: Oh, yeah, he's like a king on the throne or waving at his subjects.

[28:54] STEVE WEBB: It's been twelve years since your mother died. How do you feel you've changed since then in regards to David?

[28:59] DIANE MORROW KONDOS: Oh, we've become so much closer. We've kind of returned to that childhood relationship. Although, I mean, I don't want to sugarcoat it. There have been times. It's been really hard. There are times that, like most people, I'm selfish. I get caught up in my own world, and I don't want to stop and take a day to go visit him. I don't want to do everything that's required. But that's. That's less and less often. You know, I try to remember that he needs us. And there, you know, about once a year, Steve, you always talk me through this. About once a year I go through this. Maybe we should just bring him home. To live with us. And you always say the right thing. You always say, if that's what you think I'm is best, then that's what we'll do. And so when I feel that way, I bring him home for the weekend, and we do all the fun things he loves to do. He eats all the food. We watch wizard of Oz and Smokey and the bandit over and over. We go swimming and play basketball. And then after 24 hours, he starts pacing the floors saying, go back. Go back. And I realized he doesn't want to live with us. He has a home where he has a roommate, he has a job shredded in papers. They have much better meals at the home than we do at our house. And that my guilt is misguided, that he has a home where he's happy. We have a home where we're happy, that we're all in the right place.

[30:37] STEVE WEBB: Absolutely. He's happy where he is. That is his home.

[30:40] DIANE MORROW KONDOS: And that is one of my messages to parents of people with disabilities. Please don't live in denial. Find a place for your child to live before you die. I am so grateful that my parents had my brother settled in a place where he was happy before they died.

[31:01] STEVE WEBB: You have a very unique perspective since you've been both a sibling and a guardian for your brother. So what do you recommend for parents to do?

[31:09] DIANE MORROW KONDOS: Well, I'm on the board of directors for the Arc of Oklahoma, which is part of a national group that is our advocates for people with disabilities. If you need help, please call the Ark of Oklahoma or the Ark of America, and they can direct you to the right resources. Just don't do like I see a lot of parents doing. Don't leave it undone and assume that somebody else will take care of it, because it's a very complicated process to find the right place and to find the right situation for your adult child.

[31:44] STEVE WEBB: You've always talked about, don't leave it to. Don't have your plan be to outlive your child, because it may not happen.

[31:49] DIANE MORROW KONDOS: Because now here I am in my sixties and David is content. But I. This sounds a little bit selfish, but I hope that. I hope that he doesn't outlive me because now his dependence is transferred to me. So I hope that I outlive him, even though I'll grieve for him terribly.

[32:11] STEVE WEBB: Yeah.

[32:13] DIANE MORROW KONDOS: But it's. It's just been a long road. But I just want people to know that there is hope and there are some solutions. And, Steve, thank you for being a wonderful brother in law to my brother.

[32:30] STEVE WEBB: Excuse me. Thank you for being a wonderful sister to my brother in law.