Episode Three: Disability + Grace

August 11, 2024

Maura Conlon  00:06

Welcome, I’m putting on the tea, just like my grandmother did in County Clare Ireland more than a century ago.

Maura Conlon  00:21

You’re listening to Original Belonging. I am your host Maura Conlon, born and raised in Los Angeles. I’m passionate about the primal nature of our creativity, which allows us to reconnect with ourselves and with a sacred web of life. I hold a doctorate in depth psychology, and I’m the author of FBI Girl, a best selling memoir about my first 14 years a coming of age saga also adapted for stage, whether unfolding upon the page or the stage of your childhood playground. We all have life defining moments from our first 14 years. Stories that often get buried in our adult lives. Yet, these early visceral sometimes mystical experiences remain a treasure trove incubating our original wisdom. When remembered, the stories offered timeless inspiration, and resilience through thread, or our lives. 

Maura Conlon  01:46

Original Belonging is a six part narrative podcast series featuring stories and conversations, where we return to and explore the vital landscape of our early years. In each episode, I go back in time to share my story, a hologram if you like depicting the agony and the ecstasy, and the wisdom learned and these poignant coming of age years. Let’s not dismiss the places that made us come alive when we were young. They hold a key as to how we can open our hearts and evolve into our truest potential. Such primal memories are not long ago and far away. No, they live inside of you. They’re right here. Listen, close. 

Maura Conlon  02:47

Episode Three. Disability and grace. Today on the episode you will hear my cherished story of learning the true meaning of love from my brother Joe, who was born with Down syndrome. You will also hear me in conversation with Molly Nocon, CEO of Noah Homes at groundbreaking residential community in San Diego that provides exceptional care and choices for adults with developmental disabilities.

Molly Nocon  03:20

When you walk onto the property, you see these beautiful homes going up the hill that are Hacienda style, gorgeous homes, and then you see a fountain and then you see beautiful palm trees that have all been donated and all been lovingly taken care of by donors throughout the year and volunteers throughout the year.

Maura Conlon  03:38

My brother Joe was born with Down syndrome in 1966. At the time, the doctors recommended that he be institutionalized, which had been the norm for decades. But that did not happen. Joe came home to live with his family. Always ready to hug. My brother inspired in me a way of relating to life beyond the status quo. He connected me to a sense of loving that was joyous and unfettered. wisdom and grace arrive when we open our hearts to care for someone who has been named the other. To this day. Joe continues to be my teacher.

Maura Conlon  04:35

The sounds in my house went like this. I mean I say that we were quiet but there were so many sounds on New York. My father would be folding the clothes folding the laundry and he would be listening to the California Angels on his block transistor radio. My brother would be watching I Love Lucy on television and calling out and Bob Alou. I’d had a brother who plays the piano He would be playing the piano in the living room

Maura Conlon  05:10

or there would be the sound of splashing from the pool outside. Sometimes my mother would put on the Broadway show tunes. And that was always special to hear that music come through, because that was another connection back to the article.

Maura Conlon  05:30

So my youngest brother Joe was born with Down syndrome in 1966. And when I came of age, say like the babysitting age, I pitched in and helped my mom. And one of the ways I did that was, was helping Joe get ready for bed. He couldn’t really brush his teeth. So I helped him brush his teeth, wash his face, and comb his hair. But we always seem to be singing, or I would sing. And then he would say the last word to the lyric. So I would Row Row Row Your and he would say, boat. Sometimes I would sing to him, just to help him get through the business he needed to do on the toilet, row, row, row your boat. So I’d say there was a good 1520 minutes because Joe moves slowly. And that was sort of Joe’s gift is that he slowed us all down in that regard. 

Maura Conlon  06:30

He couldn’t go our speed. So we we had to go his speed. afterwards. This is the intimate details of caring for somebody who has special needs, I would wipe him up and congratulate him on a good job, then head over to the sink and wash Joe’s hands. So he couldn’t really do things like wash his hands, he needed coaching to do that. I grew up in a kind of household where everybody pitched in. I mean, my father did the grocery shopping. He mopped floors, he did the laundry. My mother cared for us and made the dinners. And so there was a sense of sort of a division of labor. So it felt really natural, just to pitch in. It wasn’t like they were assigned gender roles. So I’m grateful to have had that kind of exposure. So somehow would evolve that, with so much going on in the household with five kids that I was at an age where I could help Joe get ready for bed at night. 

Maura Conlon  07:41

There was a ritual. I mean, it was like a ritual performance. Basically, I kind of looked at it as sort of this acting opportunity. Like I can help Joe get ready for bed. And we’ll make a scene out of this. It was upbeat, it wasn’t like oh my god, I just can’t believe I had to do this. Joe would giggle and I would laugh. I didn’t particularly wonder if anybody else was doing this any of my friends. But I knew that I was pretty unique that I had a brother with Down syndrome. There was a sweetness to that ritual. I would also take Joe’s hand and we’d go find my mother and father and Joe would kiss them goodnight. And then I would walk Joe to his bed. 

Maura Conlon  08:30

And we would say I would say prayers God bless Daddy, Mommy, Mike Morell, Julie, John Joe. I mean, I just think there are things that we do because we love someone. And when you love someone, it doesn’t seem unusual. I was trained early on to be a giving, caring, loving person because there was someone in my house who who needed that. And I got something out of it too. I mean, we turned everything into a performance

Maura Conlon  09:12

there were times that we would go out for dinner at night. You know, maybe once a week good to Bob’s Big Boy was my dad’s favorite. And we’d walk into the restaurant and I was prepared. I knew that as soon as we walked in, there would be the crowd of people in the waiting room looking at us, noticing my brother Joe. A lot of people hadn’t seen a Down Syndrome person before. Some people would back away or look at us with a sense of pity. Maybe one or two people went smile. But there was definitely the sense of this performance. People don’t really understand what it’s like to be around somebody like Joe so I always had a smile on my face, as if to communicate this is a positive experience. It’s not what you think that there is an opportunity here to let down your walls and reach out that we’re all on this earth together. So like, what are you afraid of?

Maura Conlon  10:17

People like Joe, people born with what was once called mental retardation were institutionalized for decades. Starting in the 1960s, there was a growing movement among parents to raise the kids at home, and to deal with the shame that oftentimes was assigned to those parents. I mean, I know my mother was encouraged to put Joe into an institution when he was born. There was a sense in society of shame and pity and keep these people away from us. And it was not a positive thing. There was still this sense out there of a truly negative presence, sort of the sense that people weren’t sorry for us, sorry that we had to have a quote unquote, mentally retarded brother. 

Maura Conlon  11:10

That was part of the water that we swam in, in society at that time. And I think that my parents were among the first generations of parents to become empowered, and realize, Wait, there’s nothing wrong here. This child deserves as much opportunity and exposure to things in life as a quote, unquote, normal child, like, Hey, this is part of a larger movement here. Yes, it’s really unique in our neighborhood that we have this special needs brother, but we’re in a time now where people are allowed to have their voices and these kids are allowed to have their rights. My mother, who once upon a time was a bathing beauty back in Rockaway Point, New York, was now this mother of this special needs child and she found her voice in raising Jo, she truly became an advocate protesters

News Recording  12:16

and wheelchairs, the lame, the palsy, and the blind, have occupied the entire fourth floor.

News Recording  12:21

Today, more than 100 people marched in front of Congress press, the American public has seen that we have stamina, strength, and

Maura Conlon  12:29

cheap became trained in religious studies to teach spirituality to people with a developmental disability. My father started to do fundraising to build group homes. For when parents were no longer alive, these folks with disabilities would have a place to live. So my father was this very stoic FBI agent who could be sarcastic, and then he could be quiet, you know, his moods could fluctuate. But when he was around Joe Jr, he was a mosh pot. This love would ooze out of him that I had no idea my father had inside. So I was grateful to Joe, because we got to see who my father really was. 

Maura Conlon  13:12

Underneath all those layers. We were sitting in the restaurant one time, and my father said to me, looking at Joe, he glanced at me and said, You know, it’s people like Joe who hold the keys to heaven. And he would say things like that every now and again. Joe was like the little saint that had opened his heart. I found it ironic that my father who could speak wouldn’t, and my brother Joe, who longed to speak, couldn’t. A lot of the experts would call Joe severely retarded, so I was very aware of labels. While being quite cognizant that Joe was one of the most loving people I’d ever met, again, kissing, a gentleness and a kindness. So this was a part of my coming of age awareness was realizing that what the experts called one thing, in reality could be the exact opposite. 

Maura Conlon  14:25

And there was something really empowering about that. Because, you know, a lot of times we bow down to what authorities say as the truth, when in fact, it’s just institutionalized dogma, I was able to witness a crack in that kind of reality. And in that crack, my voice was able to come out as representative of challenging the status quo. Oh, this is what a writer can do is to observe these paradox Since in reality, and speak to them it’s up to us to bring that underneath reality up to the surface so that other people can realize that, oh, well, they can speak that way. So can I. That ability to hold paradox is really critical right now. It’s so easy to have knee jerk reactions to things. 

Maura Conlon  15:29

But to really sit there and see both sides of the coin exposes a deeper longing that is possible. One of the paradoxes I realized was how important caretaking is, and caring. The GDP does not measure how you are caring for your child, or your elderly parents or anybody in the community. That value of relational glue is not considered, quote unquote, valuable in our current system. Yet, this is why we have voices. So it’s empowering to hold paradox. That’s what I witnessed my parents doing. Growing up in a society where voices of those with special needs were pushed to the sides. And my parents said no way enough of that, through their voices. People like Joe became important. 

Maura Conlon  16:32

Joe really taught me that the most important thing in life is love. I mean, I was a shy kid, I had a hard time opening my mouth and talking to people. And I was quote, unquote, normal. But I’d walk into a room with Joe and Joe was ready to hug everybody. And he was called, not normal. So Joe, gave me courage to speak my voice, even though I was so shy. And when I saw people’s reactions to Him, those who are open to him, I could see a wall belt sometimes, almost as if Joe had just made their day with his reaching out to shake their hand. It was a beautiful thing to witness. He would stand in front of our house, we had a house on a corner lot and he would wave to all of the people driving home from work. We had three stop signs in front of her house and they would wave back. You know, it’s just like those kinds of gifts.

Maura Conlon  17:45

Well, when I was 14 years old, I realized I wanted to be a writer. And my father and his true fatherly form said in response, the world has enough of those, which gave me further fuel to pursue my dream. My mother saw that I like to write poems. And when I was 17 years old, for my birthday, she bought me an electric typewriter, state of the art electric typewriter, and said to me, someone in this family needs to write a book about this family. And I’ll never forget those words. And I knew exactly what she was talking about. They were busy preparing Joe for a life that was rich now and for a life where someday they would not be around. And they were living their legacy. I believe in how they were both caring for Joe, but also advocating in the community. And just educating the community all around us in various ways. So I was witness to that. 

Maura Conlon  18:55

Mom on her manual typewriter, writing for the local school board, also to senators and congressmen, to TV executives to the Vatican, advocating for more inclusivity in the larger culture for people like Joe my father organise yearly fundraisers to support building of private group homes, hidden by local celebrities in Los Angeles, that event sold out every year, people in the community did care. When you’re a witness to love, you want that story to get out there. You want other people to know when there has been this history of disenfranchisement or discrimination. It’s fear of the other. So the question is, how do we open our hearts? And how do we use our voices to really tell our truth of our lived experience? It will take some time and it will take some years. And as my mother was dying, I would come home to visit her with pages about this family. And this eventually became a book and was called FBI girl. 

Maura Conlon  20:21

And this year, I’m celebrating the 20 year anniversary of its original publication. And I’ll never forget the day when my agent in New York called me and said that there was a bidding war for my book. And I accepted the offer. And the moment I hung up with my agent, all they wanted to do was to pick up the phone and call my mother, but by this point she had passed. So I do hope that they know that the book about our family, a book about love was written. As I was writing that book, so many synchronicities were happening. It was almost as if my parents spirits were in the room. My father was a big smoker, and was diagnosed with lung cancer when he was 68 years old. So he was pretty young. And months and months and months before he passed away. I had a dream that said, December 10. 

Maura Conlon  21:22

And I woke up and I thought, that date has got something to do with my father’s death. And sure enough, he was buried on December 10. And then the one year anniversary of December 10. I was in the West Indies. I was doing a volunteer stint there with my then husband. And I had a mass said in the local village in honor of my father’s passing. And sure enough, on December 10, I go to the church, and in the church doors, walks a young fellow who has Down syndrome, and he sits down right behind me, and looks right into my eyes.

Maura Conlon  22:17

My parents had a divine contract. And a part of that was bringing Joe into the world to bring that much more love into the world. They love the rest of us too. And they wanted us all to have our independent, happy childhood lives. But there was something about Joe where they really came together. And I feel the same about writing the book, FBI girl, which I dedicate to Joe, I feel that was part of a divine contract. There was definitely a feeling like done, the story is out there. It was as if I had reached Everest. But I just remember this sense when I was talking to my agent about the different offers that were on the table and I felt so calm, like there was a sense of inevitability about it. Like, oh, yes, this is what I’m here to do. And that’s why this is happening right now. I almost felt it was destiny, playing itself out that I had trusted that process of writing interest in my voice.

Maura Conlon  23:30

After FBI girl was released, within a year or so, I had the wonderful experience of being contacted by Tammy Ryan, a playwright in Pittsburgh, and FBI girl was adapted for stage and produced at the Pittsburgh Playhouse. It was so amazing to see one’s life story on stage. The book would make a great movie. And I really hope that happened someday soon.

Maura Conlon  24:02

So the work really is to connect to that place of fear or what’s been walled out or know what stories we haven’t liberated from our own life experience. So much is in the silence. Speaking of silence, my mom had been diagnosed with ovarian cancer when Joe was in his early 30s. So it was time for him to go into a group home. Luckily, we had a family friend and learned about Noah Homes in San Diego, a place known for its compassionate care. So Joe went there and he was happy from the beginning. Even though I imagine it must have been really hard for my mom to let go. When mom was in her final days of life, on hospice, sleeping, no longer drinking water. It was clear or she was waiting to die for weeks. But she kept holding on. 

Maura Conlon  25:07

My older brother Mike picked up Joe from Noah Homes and drove him to our house when evening. I was afraid that Joe would be shocked to see mom, so weak, you know, in her hospital bed, her eyes closed, nonresponsive. Jill entered her bedroom. He sat next to her and said, Mommy, so gentle. He placed his hands over her eyes. That night, Solstice, December 21. Winter 2000. My mother passed away. My sister Julie and I at her side, it seemed Joe’s arrival, gave her permission to finally let go.

Maura Conlon  26:05

We had a piano in the living room of our childhood home. And it was in that same living room where my mother decades ago, right up for Joe was born. And she found out that he had Down syndrome, that she would sit in that living room, private, away from the rest of us kids and she would cry and ask God, why he had given her this child. She told me all this years later, and in her tears, she said that she finally heard the voice of the Divine. She heard the word that love was all this special child needed, and that her love would be enough. In that same living room as Joe grew up, I loved having him sit next to me on the piano bench and tinkle the ivories.

Maura Conlon  27:03

His little fingers Joe’s original belonging was music and love.

Maura Conlon  27:19

Caring for the other isn’t just a nice thing to do. It’s what we’re here for. And the more we don’t do it, the more we all suffer. So I do feel like it is a biological imperative that we wake up to how important it is to care for each other. We’re like the mycelium, the rhizomes may we are all connected. That’s what’s happening right now we’re waking up to the fact that we are connected. But if we’re connected, we all have to be connected. That’s how connection works. Who do you care for? Or what kind of caring is going on in your life? I mean, chances are it could be a pretty long list, caring for parents or siblings with special needs or somebody in the community or we all have our list of people in our life that we’re concerned about, or even beyond our life when we see so much pain and suffering going on in the culture at large. I mean this is hitting such a nerve in terms of this filth, powerlessness. How do I articulate my voice to say that caring for one another is the most important thing we can do on this planet right now. Starting where we’re at.

Maura Conlon  28:46

Even now, all these years later, Joe and I sing the same songs we have been singing for decades. Female

Singing  28:59

re drop of golden Shah Vianney my co my long, long way to

Maura Conlon  29:11

four decades. I did not live close to Joe. Joe lives in San Diego and I was back east and up in the Pacific Northwest. So I would call Joe on the phone. And because he can’t speak in normal everyday English, he can sing or he remembers lyrics

Singing  29:31

tea, a drink with German will bring us

Maura Conlon  29:40

I would call him on the phone and ask him if he would like to sing a song. And he said yes. And I would ask him okay, count to 3123 and I would start singing the songs that we have been singing All of our lives together

Maura Conlon  30:10

this past year, I moved back to Southern California. And now I see Joe more often down in Noah Homes. And that’s what we do we have lunch and when lunch is over, we start singing our songs together. Judo very good. But the countenance on his face when he is connected to music and singing, it’s as if he’s in a trance, he’s in another world. Even though I moved away all those years ago, when Joe and I would sing together, it was as if we were in the same room. Like there was no distance between us at all. And my heart would be so flooded with love. I realize how much I missed being close to Joe. I am grateful now to be living closer to him as he ages.

Maura Conlon  31:10

For nearly 25 years, Joe has resided at Noah Homes, a residential community in San Diego that provides exceptional care and choices for adults with developmental disabilities. In his mid 50s, Joe was diagnosed with early stage Alzheimer’s, a condition which affects many aging persons with Down syndrome. Malino Khan is the CEO of Noah Homes, where my brother Joe lives. This special place also models and innovative approach to memory care. Like me, Molly is a sister to a brother born with Down syndrome. She takes us into her early years to share what inspires her work today.

Molly Nocon  32:00

So I grew up the youngest of three, and we grew up I grew up in one home, my sister and my brother Herbie were just two years apart, but I was 10 years apart from them. So I was the Oopsie 40 New Year’s Eve baby. So my sister and brother were only two years apart. And so I became known obviously as the bratty little sister who came along much later in life. And by the time I came along, my dad’s military career was over, and they decided to settle in San Diego versus going back to Kansas City, Missouri. So I was very, very pleased about that. And I grew up very differently from my brother from Herbie and my sister Susan, because they traveled and moved every two or three years. And it was a much different experience of living than I had. 

Molly Nocon  32:44

So to this day, my sister’s at 7576 now, and my brother her passed away, just shy of a 60th birthday. So he’s been gone a while. But we we compare stories and our stories of growing up are so much different because I was in one home and one place and my parents were in a different stage of life, and my dad had retired from the military. So very different. And I think one of the things that I always heard from my sister was she spent a lot of time especially they grew up in the 50s, and 60s, and there wasn’t a lot of information about Down syndrome. And she spent a lot of time defending her and defending him from other people and people from saying mean and hurtful things. 

Molly Nocon  33:22

And Herb was a very happy go lucky guy. And the only thing that became an issue for them when he was younger is that he had a pretty good heart murmur. And it was never something they fixed because I believe the heart lung bypass machine was created a couple of years after he was born. And by that point, he was already well on his way and doing okay, and it wasn’t a situation where they just immediately took you in and fixed it. So he he did fine. But he would literally as they were out playing or something, he would just sit down and go to sleep for 510 minutes and let his body catch up. And then he’d wake up and people just didn’t understand what was going on with him. And she just say Just leave him alone. He’s resting

Molly Nocon  34:04

He reminded me that he was the older brother and I was to listen to him because he found out that that’s how it supposed to work out that he’s in charge. So that went on through our entire life.

Maura Conlon  34:12

Okay, so that was sort of like a teaching that he he gave to you like I’m in control here. I

Molly Nocon  34:18

had no choice. And there were times when he did move into the stages of Alzheimer’s that we would literally have to myself or his house manager would have to call my sister who at that point had moved to Colorado and say, Would you please tell Herbie that he needs to brush his teeth or that he needs to take this medicine or that he needs to do something because you are his older sister, and he will listen to you and sure enough, okay, Sue? Yeah, I’ll do that. Whatever you say. And I thought, oh my gosh, so there were many times we’re on the phone getting her to tell him what needed to happen. Yeah,

Maura Conlon  34:47

So Herbie, after he was born, he came home and I just think about that era because he was born in 49. And Joe, my brother was born in 66. And even the doctor said to my mother, put Joe Anna institution, so even in 66 sale, this is what parents are being told. So any sense of what your parents were told? Yeah,

Molly Nocon  35:07

it was very, it was tragic for my mom, I at that point, my parents were in Guam. And they were stationed over there and my sister was to at the time, and she had a pretty difficult delivery from what she said. And she always had in her mind that because of the poor health care over there, and what happened that that’s why her bill was down syndrome. So it took her a while to understand that that’s not what caused it. 

Molly Nocon  35:31

She got a horrible telegram. She came from a family of nine. And she got a horrible telegram from her oldest brother that I that I have to this day, it was in a file and I kept it and thought someday I might use this for something but it’s a Western Union telegram that says Dear shall, her name was surely so sorry to hear about your Mongoloid idiot son, get him into an institution as soon as possible. Love your brother. I thought wha? That was her opening salvo of having a son and what her family member thought about it.

Maura Conlon  36:06

Did your parents talk about those early years after Herbie was born? Were you aware of their feelings or their thought processes about how they were going to care for a child with special needs. They

Molly Nocon  36:20

always made her be just be the person that he would be whether he had Down syndrome or not. And I always admired them that he was always included just like anybody else was there was never a thought that he wasn’t going to do with the rest of us did. And if he needed help, they did it. And I I mean, I don’t remember the super early years, because I mean, I came along at 10. But even probably until, until he was 15 or 20. At that point, I paid more attention. They they were doing it on their own. And I know it wasn’t easy, because I know my grandmother came in live with us she had I wouldn’t assume at that point, she had dementia or Alzheimer’s. 

Molly Nocon  36:51

And so my mom was dealing with her at home, six months out of the year. And then my brother was going to school. And I do remember times with social workers coming over and visiting and saying some of the craziest dumbest stuff that I’ve ever heard in my life and things like well, you know, when Herbie wants to get married, and when Harvey wants to go live in an apartment on his own, and he was a 12 year old, he was never going to be past a 12 year old. But there were some really interesting commentaries and those years of what they thought they could do. And I know that really drove them nuts after a while.

Maura Conlon  37:19

How did your parents deal with the fact knowing that someday, they were not going to be alive anymore, and that Herbie would need care. Was that awareness, a part of the conversation in your home?

Molly Nocon  37:33

It was a conversation probably later in life, I would say probably when they were in their 60s, I mean, I was born, she was 40. So probably in their 60s, they were doing more of the planning, my dad became was retired, retiring at that point, my sister was married, and she ended up having children later in life that she adopted. I think at some point, when I was more in the college age timeframe, we had a conversation and my dad said, you know, we put our trust together, and we have money set aside for Herbie, and these are his benefits. We don’t want to mess these up. And you guys, you know, we’ve got plenty of money set aside, you guys are okay to take care of him. And we both said, Yeah, that’s fine. 

Molly Nocon  38:10

That’s not going to be an issue. And my sister and I always got along well, and never had fights or issues or things like that. And my sister is one of those very laid back, she always laughs and said, she’s always the one that gets put on the medical power of attorney because she has such a calm demeanor, and everybody thinks, Oh, she’s going to make good decisions. So have her be on the power of attorney because she won’t be too emotional. She’ll be very low key. We both took care of the trust. And when my parents died rather close to each other. We just assumed her we would live with one of us. That wasn’t what he wanted. He wanted to be on his own and long story short, we realized he needed a life and it couldn’t be at a at an assisted living. 

Molly Nocon  38:44

And I called first and said My parents told us about Noah Homes. We’d like to know if there’s room for Herbie and she said, you know, not right now, but come take a tour. And you never know. So my sister and I toured and said, Well, gosh, we’ll live here. I think we toured in October. And in January, we got a call that they had bought Casa Flores, the other house by the nursery and they said we need six people and we need people that are pretty independent, and that can walk up and down the hill. And we’d love her we’d be one of them. And it took us about two months. It was of Come on. We’re just gonna go have lunch over there. We’ll have lunch but I’m leaving lunch, come back and have dinner. Okay, we’ll have dinner. Okay, come to the movies. So they got him slowly but surely up to stay over. And within about a month. He was happy to be there. It was a blessing because we had no thought that this is what he needed. 

Maura Conlon  39:31

What impressed you about Noah Homes at that time that you just knew it was going to be a good fit for your brother.

Molly Nocon  39:40

It was a beautiful property. There was a lot of room. The house was just a normal house with people that he already knew. And he was thrilled his friends were there and he was so happy just to be there and enjoy and talk and chat and I didn’t realize how isolated you had been before and so made me realize, gosh, he needs his own group of friends just like the rest of us do.

Maura Conlon  40:05

That’s so true. That sense of community is so important. Can you share with listeners one of the core challenges you face and advocating for Noah Holmes?

Molly Nocon  40:19

It’s an ongoing battle of thinking that these folks are in an institutional setting if they live with each other, if they’re around each other. And I’ve always had to just say, gosh, you know, my husband loves tennis and you government to let him get his social security, you’re going to tell him no, you can’t live in a tennis community, we want you to live in a basketball community, because you need to live there, that’s we’re going to have you live. But that’s not good for you. But that’s we’re going to tell you to do because we think it’s good for you. And I feel the same way about our residents. 

Molly Nocon  40:44

They want to live with their friends, they want to be around their friends, they want to do activities with their friends. And I guess there’s just this ongoing fear of what if we ever go back to the institutional settings of three and 4000 people, and I said, if you’re doing your job, and families are doing their job, that won’t happen. It’s not a necessary evil. It’s it’s a way of paying attention to what’s going on, and we learn from our past mistakes. So that’s always my frustration is no as a beautiful place people know it is. And I can’t tell you the number of people that are in government that are at regional center, and all of them have said, If I had to live someplace, I want to be at no homes. So we know that it’s all good, but they’re also playing the government by the playbook. And it’s very frustrating. Well, if

Maura Conlon  41:25

I can just bring some emotion in here, just the importance of caring and compassion. People say the world needs more caring, the world needs more compassion, but you step onto the grounds that Noah Homes and it’s like you’re swimming in it. So could you maybe just paint a scenario for somebody who’s never been to Noah Homes, what caring looks like there what compassion feels like there? Because I think people do think of the old days of institutions. And that’s a scary, scary word feels so retro. So what does compassion and caring look like if we’re just seeing that happen right now, right before your very eyes, to give

Molly Nocon  42:04

a little context, the Noah Homes model is something that evolved through a LaRoche method, a gentleman who saw in Europe, how communities who come together and take care of each other, and that if somebody was elderly, that they would bring them bread, and they would help them and they check in on them. And they brought the same concept to people with disabilities who were abandoned or who had no family, and they created homes and they said, We’ll take care of you come to our homes, and then all of a sudden these homes started multiplying, and they became more in the community. So they became a community setting. And they started being multiplied around the world. 

Molly Nocon  42:36

And the good thing was they weren’t just multiplied as one type of house one type of building it was they were co blitzes in Israel, they were farm settings in Pennsylvania, and they were camp settings and Arizona. A good number of them around and every, every community adapted to what that community needed. Sister Catherine Jennings managed to do the same thing. And in San Diego, she saw a beautiful piece of property. And I’ll never understand how did King and a couple of those family members looked at an alfalfa farm out four or five miles from nothing. There was nothing out there at the time, on 10 acres and figured out this could be Noah Homes. And when you walk onto the property, and you see these beautiful homes going up the hill that are Hacienda style, gorgeous homes, and then you see a fountain and then you see beautiful palm trees that have all been donated, and all been lovingly taken care of by donors throughout the year and volunteers throughout the year. 

Molly Nocon  43:32

And you recognize that these folks are in a very safe place where they can be themselves. And I always have one example. And when I was working at Noah and Tim Reman, and yet another young man who has been there now, he’s actually the same age as Noah, sister, Catherine saw him in his family when he was first born at Santa Sofia and went up to them and said, You need to stay in touch with us because someday he’s going to want to come live with us. And it’ll probably be when he was about 21 or 22. He was a landscaper, and he would came back after living with us a couple of months. And he’d come in my office and he said, Molly, I’m so glad you picked me to live here. I said, Tim, I did not pick you. I said your housemates picked you you pick them. You decided you want to be here and they accepted you as part of their family. 

Molly Nocon  44:11

This was all you guys, I I’m just here to make sure that your house is okay. And that you have staff and he said, I like it here because I’m normal. And I said what do you mean, you’re normal? Of course, you’re normal. Everything’s fine. He said no out there. When I work. They call me retarded. And they call me stupid. And he said when I come back here, I’m just him. And I love being here. And I’m okay being out there because I can be okay there too. But here I’m just normal. And that’s always stuck with me. And I’ve always wanted people to just hear that and hear that just being with another group of people that are like them is comfort, and that’s what no one is. It’s a comfort. It’s a place to be that you’re not judged differently because you’re not the same as the rest of us.

Maura Conlon  44:52

That’s it’s really beautiful. We live in a culture that’s very individual focused, kind of hyper individual focus, but like you say This model of community has such roots to it. And for a good reason. We’ve lost that. But no a home is just is the perfect example that we all can learn from. So

Molly Nocon  45:09

true. And we learned so much from this, the residents themselves and now that we have homes that were they can come in at the age of 18. And be there till end of life. I mean, that was always I think, the concern of all of us that when my brother was diagnosed with Alzheimer’s, and that was back in 2007 or so there was no care plan for them. And when I went to the regional center and asked what was going on, they said, We didn’t plan for them to live this long. We thought they’d be dead, we don’t have any plans. And that was their comment. So lucky for me, Herbie had been there 14 years and the staff did not want to let him go and didn’t want him to go to a nursing home. So he was only gone to a nursing home for about the last nine days of his life. So I was fortunate, because he didn’t know he was gone. And he was still okay. And he was happy. And he was just kind of like was Feliu going away. But he was okay. 

Molly Nocon  45:54

And I didn’t have the horror of another family that had to tell their sister every day, I’m so sorry, you’re not at Noah, they can’t take care of you. And she was gone for months. And it was horrifying. And we we actually got to record that because they wanted people to know what they were going through. So they recorded her last month of life and what went on. And we show that at the Department of Developmental Services to understand this is why we need more memory care. So after my brother passed away, became my mission to make sure we have that. And the typical government. No, they’re not going to live that long. No, we don’t need to worry about that. No, it’s not a crisis. And think was about three years later, after I’d gone to the state and gone to the Feds and nothing had happened. I got a call from regional center. And he said, Hey, remember those those houses you want to build for? Remember Kerry said, do you still want to build them? 

Molly Nocon  46:38

And I said, Yeah. And he said, well, we need them. I said, why? And he said, Well, it’s a crisis. I said it was a crisis five years ago, he said, Molly is the state. Of course, it was a crisis five years ago, but now it’s a huge crisis, and we need the homes. So with the help of regional center, and his willingness to call in a lot of favors and make it happen, the memory cares were born. And it took a lot to get them to admit that they needed them. So was so wonderful that no one I think we’re just completed the circle for all of us is that, you know, Herbie could be there at 18. And he could die peacefully at 60. And just be in a different home, but still be at Noah. And so that’s been the wonders of the memory carrier is that because all the managers are tuned to what’s going on with everybody and all the houses, there’s 90 residents there, there’s 10 homes, all the homes are slightly different. 

Molly Nocon  47:25

There’s different mixes of people. And they’re all family units, they work together. But if you know somebody in that family doesn’t want to go have pizza that night, because they don’t want to go they go knock next door at their friend’s house and said, What are you doing? And they find out, they’re going to the park and I go with you can I go to the park? Yeah, sure, come on along, and all of a sudden, they’re off at the park. And you don’t get to do that in a six bed home. Because in a six bed home all six, you have to decide to do the same thing. And if you want to go visit your friend, three blocks away, all six of you have to go visit your friend. So we also have the ongoing commentary that we are far more compliant in the home settings that they want us to be than any of the smaller homes because they don’t, they’re not staff to do it. So we’ve created this wonderful, frankly, a kind of utopia for them where they they get to do and be who they are. And they’re very protected. And they’re very taken care of. And they’re very independent, they can be as independent as they want or as taken care of as they want. It’s up to them. It’s like

Maura Conlon  48:17

a really rich ecosystem. I’m curious, is that pretty rare to have a organization like Noah Homes with memory care capacity,

Molly Nocon  48:28

we’re the first in California to have it, we are probably one of the first half dozen in the country to have it. And we are getting a lot of resistance on building more community settings like that, because we’re too big. So it’s going to be awhile before it’s accepted. If you are willing to build a four bed home for memory care, you can build them doesn’t matter that the financial side of it doesn’t work out, it doesn’t matter that somebody running it can’t make money and can’t make a living. That’s what the state wants to see. 

Molly Nocon  48:55

So in many cases, they end up having to subsidize the homes to the tune of we’re we’re able to do it for about 10 to $11,000 a month per resident and keep them safe in the memory care. The state will sometimes have to pay twice that to keep before bed open. But they will do that because they’re insistent that four bed is the model. So that’s a frustration and how they’re being put together out there. And that’s why there’s 150 People in the waiting list have Noah Homes right now. Because we can’t build anymore and we can’t create another Noah Homes because it’s not the model they want. And

Maura Conlon  49:25

where else can they go? I mean, what what else is out there?

Molly Nocon  49:29

Their mom and dad’s home. Their most of you look at the statistics, the number of folks that are 50 years plus living at home with aging parents is just growing leaps and bounds. I think it’s over 20 or 30% right now. And every time we talk about the aging caregiver and how they’re now starting to have problems, it’s just ignored. It’s not something they want to deal with right now. Because they will just continue to give more support in the home, saying we’re helping out we’re giving more support to the home. 

Molly Nocon  49:53

But it’s doesn’t mean that the caretakers aren’t continuing to age and at some point doesn’t. Joey and her be deserved their own life, do they mean we moved out? We moved out after we get out of college? Don’t they get a right to move out? Don’t they get to go have their home and their life? Or are they just supposed to be with mom and dad for the rest of their lives, and, again, a conversation they don’t really want to have. But that’s unfortunately, what’s happening right now. So

Maura Conlon  50:15

even if parents do let go of their, their child as they age, that whole passage is so challenging for parents.

Molly Nocon  50:25

California is an entitlement state. So we’re gifted with the fact that we do have some funding for it. And it’s better than 49 other states, but it’s still not at a level that allows them to have the choices they want. And unfortunately, choices are getting less instead of more.

Maura Conlon  50:41

I’m curious, kind of going back to your early years, you know, growing up, I knew I grew up thinking, let’s put it this way. My mother gave me a typewriter when I was 17. And she said, You need to go write a book about this family. You know, I wrote FBI girl. So there was a sense of mission, I always felt having a brother with an intellectual disability. And I’m wondering if you felt that as well having a brother with an intellectual disability, or some sense of, I want to do something for him.

Molly Nocon  51:09

So I have to be very honest, and say that I was a bratty little sister, I was very annoyed that I had to share my parents with him, I was very annoyed that he got a lot more attention than I did. And so I was not the best sibling for a long time. I didn’t beat him up or yell at him. But I, I wasn’t humble and I wasn’t understanding of it really, um, my dad and I had some conversations about I just had a very headstrong attitude in my life of how I wanted to do things. Probably a turning point for me was when my parents were dying, Herbie became very attuned to what was going on, and very matter of fact, and he had a school to go to he had a job to do, and he knew my parents were okay. And he needed to go to school. And when my dad died, he said, Well, I’m the head of the house. 

Molly Nocon  51:55

Now Dad told me to take care of things. So I’m gonna go take care of the flag, and I’m gonna take the trash out. And so he just went into a mode of taking care of things. And we watched the folks at Noah when people have passed, and the very same thing happens. They look at life in a very factual way of what do I need to do to take care of somebody or something to help the situation versus becoming hysterical or angry, they just do what needs to get done. And I’ve always admired that. When I had to come in and help it No, I had no intention of ever doing that. I had an accounting company, I had a little marketing company, I was raising two young children, I was not in any kind of financial situation to really do much more than just volunteer time, we had money set aside for Herbie, but it never dawned on me that I would ever do this. And I think I became a much more understanding and humbling person. 

Molly Nocon  52:45

After I came in to know up more so because one sister Mary assured me that, no, your brother’s never going to listen to you. And we’ll have to keep telling him what to do. But everybody else will, because you’re the boss. And I didn’t believe her. And when one of the ladies came in and said, Look out, it’s Molly, she’s the boss, the boss is coming. I thought she meant that that’s true. So once I learned, they all thought I was cool. My brother just thought I was done little sister. Then I realized, okay, this is the pecking order. This is how it works. And I was much better with it at that point, because then I understood and I was feeling kind of crappy that I didn’t know more about Down syndrome. I didn’t know more about what to do, because I could have been a better sister. And it was, it was just hard. It wasn’t a situation where I felt that I understood it. And I don’t think my parents did either. I don’t think there was a lot of education about it, and probably until the last 20 years or so.

Maura Conlon  53:28

So what was your vision when you first came to know home’s brand new into that field? Well,

Molly Nocon  53:35

knowing nothing about it, I was faced with having to change. A founder was leaving and a founder holds on pretty tightly. And there’s something called founder syndrome where they just kind of know how they want to run it, and it’s their baby, and nobody else can do it better. So it was really hard to step into those shoes and understand that I was going to be judged based on the fact that you’re just following the founder and how could you do that? So it took a while for families to believe that I could do the task. And I think when I made the decision, I think I’d been there two or three years when Herbie died. And I said we need memory care. They thought I was nuts. 

Molly Nocon  54:10

And I had no idea how to build a house or anything else. But they understood and I kept going. And when the first large donation came in, and then the second large donation came in, they said, Oh, maybe she does kind of know what she’s doing. And I kept going, and we figured out how to build the homes. And we had the built in about three and a half years from the time we started raising money to the time the doors opened. And when they saw them, and they saw the research we did and the amount of time we spent traveling and talking to experts and figuring it out. They had a lot more faith. And it’s been a godsend for Noah because now every parent that comes if their child is wants to be with us, and the family unit wants them to be part of it. And they don’t have any significant medical issues which 99% of them don’t. They’re with us don’t have life. And that’s all anybody wanted the assurance of because I couldn’t say that before. Did

Maura Conlon  54:55

you always know that you are a leader? You have such strong vision for what use See should be,

Molly Nocon  55:01

I was always a leader in the sense that I always wanted to take charge and get things done my way. Part of it was a bit selfish because I liked it my way. But the other part was, I knew that I could get it done. And I knew I could get it done rather quickly. And probably my biggest good and bad trait is that I just want to get things done. I spent a lot of time on the bigger vision. And I got really smart early on and made sure there are people around me that knew how to do the details, because I just didn’t have the time or the energy for that I had energy for other stuff. So yes, I’d spent a lot of times writing plays when I was younger, just funny. 

Molly Nocon  55:32

You say the book I wrote plays for the neighborhood kids, but I was always the director behind the stage yelling lines to people, I was a terrible actress, I could not act for the life of me, I sang very well. And I actually sang for weddings for years making money in college. But in high school, they asked me to come and be in the in the musicals. And it was so pathetic that they basically to say, I’m so sorry, we just can’t have we want you to star on the show. But you’re a terrible actress go back to the chorus. And I said I 100% agree. I can be the director, I’ll contract for you. But I can’t afford nothing. So

Maura Conlon  56:06

yeah, I’m really curious about if you can speak to Noah Homes connection with the community and community involvement. The presence of Noah Homes is the secret out, I

Molly Nocon  56:18

took over it was 2008. And there was a lovely recession going on. And the first thing I heard from the state was welcome to the organization, we’re giving you a four and a half percent cut. And by the way, next year, we’ll probably get another one. And so we actually got to the point of saying if we had to close doors, or if we had to send some people to go home with their parents for a while until we could figure it out. This is what we’re going to do. And so we wiggled our ways up out of the financial hole and brought in a lot of volunteers. And the founder didn’t like branding things because she wanted the folks to have their privacy, which I understood. But we also needed a way for people to know we’re here and that we need some help. And we need to have some support. 

Molly Nocon  56:54

So we kept walking that fine line of branding the cars and then get joining the Chamber of Commerce and high school came and was built next to us. And so everybody knew Noah Homes now, because there was a high school next door. And so then the high school kids came over and volunteered. So it’s kind of a slow migration of people that we knew my children at that point got into high school. So they started coming over and volunteering and bringing their friends from nearby schools. And so it was really kind of an evolution of more family units bringing more family around. And we went from having probably 20 or 30 volunteers to having three or 400 volunteers in a year coming in to do different projects. And we put our residents to work, they wanted to work, they were all out of jobs, because they got rid of the supportive funding for jobs. And they were all at home. Now they didn’t have jobs. So that’s how Janet village was born. And now, that’s our second largest fundraiser. 

Molly Nocon  57:48

We always talk about the Noah bubble, and especially when COVID came around. Those folks were on lockdown for almost 18 months, and not a single person got COVID. And we made it all the way through to the end of 2020. And literally were in line to get the first round of vaccines. And a staffer came in asymptomatic, and it was up in memory care. And one of the ladies up there constantly hug people and we got hit, but nobody died. Nobody got extremely ill. And in spite of that outbreak, we still got the first round of abstracts for those folks, I can tell you the death toll at all the other facilities was horrendous. So we knew we had a bubble, but that just convinced every single one of us that know what is protected. And there is a bubble when you come on the property and you felt it and I felt it. And it’s there’s a magical purpose to being there. Yeah, safety

Maura Conlon  58:38

has so many different levels and meanings depending on what the circumstances are. So it’s a amazing story. I’m curious if you could say a little bit about the staff there and how the vision and the ethics of care is taught to people who work at Noah Homes.

Molly Nocon  58:56

So early on, when people lived in the homes that was there as live in staff at all the homes, it was a very different scenario, because you basically if you wanted a day off, you had to go find somebody to come stay over for you. So that was the kind of family unit that it was. And then as those changed and the laws change, and you couldn’t just pay somebody a stipend to sleep and you had to pay them by the hour. We went from being fully staffed at 40 people to having to be fully staffed at 85 or 90. 

Molly Nocon  59:21

And when Memory Care came along, our 80 or 90 went to 130. And so we no longer had the ability for me, I didn’t know all my staff anymore, I was grateful that I knew 95% of my residents and that change the dynamic, but what we recognized and really pushed on was education is the key and you have to give them a reason to want to stay. You also have to figure out how to identify those superstars and just hold on to them. And so we’ve really made it something that we told the senior managers especially in the in house managers, you got to have a buy in and got to make that buy in happen. And that’s we found some amazing superstars. And I think education was the key for us right now. What would

Maura Conlon  1:00:00

you say are some of the emotional paybacks to you? I mean, you’re a strong leader, you’re a visionary you make things happen. But are there moments where your heart just feels like wow, look at what’s going on here at this place.

Molly Nocon  1:00:17

I have to say, when I watched a number of the folks come right behind my brother, he had a number of friends there that were his age. And when we saw him pass, he, obviously his memory cares came out three years later. And then we watched another young lady who missed the memory cares by four months. For me, the fact that I’ve achieved the ability to say to a family member, they’re here until end of life, unless there’s some really odd thing that happens, but they’re here. I can’t imagine what my parents went through. I mean, they were grateful that we were here. And there’s families just like you guys that are going to be there for the kids. But it’s may not be what you think it’s going to be. 

Molly Nocon  1:00:50

And I can’t imagine having kids on my own, that I’d have to worry about what’s going to happen to my child. And they’re still worrying. It’s I mean, the people with autism, especially, it’s so much different, it’s so much harder. And there are not homes for them, and they’re not programs for them. And so now this whole group of people with autism are the next group of how do we take care of them? How do we provide homes for them, and it’s not happening. So that is my moment of, okay, I’ve given 90 families peace, knowing that their child is here, and that they don’t have to worry and that they’re going to stay here?

Maura Conlon  1:01:21

Well, what you just said about giving 90 families a sense of peace is beyond words, beautiful,

Molly Nocon  1:01:28

I wish that the state would listen, we could do more, there’s 460,000 people in the state being taken care of. And there are 30 or 40% of those still at home. And that’s what worries me down the road. But we can only do our part and do our part in our part of the country and hope that people see it. And we’re talking to people all around the country that are all trying to do the same thing. So I think that momentum will help to what can

Maura Conlon  1:01:49

other people do to advocate for this cause that you’re talking about? I mean, you’re doing it, you’re leading the organization. But what about families? What about community members? Is there other advocacy that can happen? The

Molly Nocon  1:02:03

biggest thing we always say is we’ve never wanted to only have Noah Homes, we’ve never wanted to have only a community we there’s a lot of people that are very happy in for bed homes, they’re very independent, they drive they have their friends there, they can engage with their families. So it’s not just a no, it’s more choices. And I always just say to families in general, just advocate for more choices advocate that not only are their choices, but that your sibling is making the choice, not you not your parent, you certainly need to guide and help. But if they’re able to make a choice, and they want to make a choice, let them and then frankly, let this case manager know this is up to them. It’s not up to you. We’re here to support them in their choice of housing. 

Molly Nocon  1:02:40

So no, it’s not up to you to tell them where to live, it’s up to you to support their choice. You can’t solve the problem for 460,000 people with four bed homes, you can’t do it. But you can with 90 beds and with 30 beds and with 40 beds and with a commune and with a farm. And with a social community like a I mean, there’s how many Del Webb communities are there in the country that you know, have 5000 seniors living there? I’m not saying do that. That’s not what where we want to go. But does it not mean that we can’t do 50 that the community can’t oversee 100 that the communities can’t work with families and decide what needs to be done? I mean, why can’t each community make their own decisions? You

Maura Conlon  1:03:16

know, that bratty kid sister you’re talking about earlier? If she walked into the room right now and saw what you were doing on behalf of people like your brother, Herb? What would that 10 year old girl say to you right now?

Molly Nocon  1:03:30

She’d probably say I wish I had the internet. And I wish I understood what you know, because I didn’t get it. And now that I get it, it’s pretty amazing. And I always think of my kids. They understood that Uncle Herbie was who Uncle Herbie was. And one of the famous things my brother said to me is he was in all time dealing with Alzheimer’s and wasn’t listening. He would just say, and my kids thought it was hysterical. Oh, Molly, you just don’t want me to be happy. And then he laughed, and he said, Don’t worry, I forgive you. And I wanted to scream at him and say you did it to me. What do you mean, forgive me and my kids would say, Mom, just let Uncle Herbie be happy. I said, okay, okay, that’s fine. I agree. Gotta let go. He’s happy.

Maura Conlon  1:04:14

Wow. Amazing. I never met your brother but I feel his spirit and I feel his power and his leadership and the sister really embodying the same virtues as her big brother. He was

Molly Nocon  1:04:29

known as the Sheriff of Noah for a reason. He wrote tickets to people that have their cars open. He didn’t let you not not locked doors. He was in charge at NOAA. So yeah, it didn’t fall far from the tree.

Maura Conlon  1:04:45

That was Molly Nocon, CEO of Noah Homes.

Maura Conlon  1:05:00

Thank you so much for listening to Original Belonging. I’m your host, Maura Conlon. Please subscribe rate and recommend with love wherever you listen to podcasts. And to find out more about each episode, please delve into the show notes. To learn more about how you can engage with the world of stories within you. Please find me online at originalbelonging.com and on Instagram @originalbelonging. This production was co created by award winning media midwife, Ahri Golden. You can find a link to her work in the show notes and on her website, ahrigolden.com That’s ahrigoldn.com. 

Maura Conlon  1:06:07

Join us next time as Original Belonging continues.