Building a community for our kids with disabilities with Dr. Molly Denny

In this conversation, Valerie and Dr. Molly Sullivan Denny discuss the journey of creating a supportive environment for individuals with special needs, focusing on independence, early intervention, and community support. Dr. Denny shares her experiences and insights from working with children and adults with disabilities, emphasizing the importance of teaching life skills and fostering a sense of belonging. The discussion highlights the challenges and successes of transitioning individuals to independent living while addressing the unique needs of each resident. This conversation explores the evolving landscape of adult living for individuals with disabilities, focusing on community support, the spectrum of disabilities, family dynamics in letting go, and the importance of finding purpose and independence in daily life. The discussion highlights the need for planning and understanding the unique needs of each individual, as well as the societal shifts towards more inclusive living environments. 

Dr. Molly Sullivan Denny has a Bachelor of Arts degree with a focus in communication sciences and disorders. She has also received both her master’s and doctoral degrees from Texas Woman’s University with a research focus on the effects of early intervention on the development of children with Down syndrome and the family dynamics of perceptions of siblings who have a child with special needs in their family. She worked at the RISE School of Dallas as a lead teacher and the Educational Coordinator. Currently she is the Director of Community Life for Daymark Living since 2015.

Takeaways

•   Watching residents learn independence is rewarding.

•   Community support is vital for families.

•   Independence looks different for everyone.

•   Teaching life skills is essential for success.

•   Transitioning to independent living requires planning. 

•   Societal views on disabilities have shifted from isolation to community integration.

•   Peer groups are essential for social interaction and personal growth.

•   Independence is fostered through daily activities and responsibilities.

•   Family dynamics play a crucial role in the transition to independent living.

•   Planning ahead is vital for the future of individuals with disabilities.

•   Purposeful activities enhance the quality of life for residents.

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Connect with Molly Denny:

molly.denny@daymarkliving.com                         

https://www.daymarkliving.com

Connect with me:

info@foreverhomeconsulting.ca

Music Acknowledgement: Audio Coffee - Denys Kyshchuk

Editor: Scott Arbeau

Link for book: The S.H.I.N.E. Principle: The special needs mom's path to strength, hope and happiness by Valerie Arbeau

https://www.amazon.ca/dp/B0CW18ZXGX (Canada)

https://a.co/d/03hFdZI4 (United States)

Learn more about your host at:
https://coachingwithvalerieanne.com/

Transcript

Dr. Molly 

I think that's one of my favorite things about my job is to watch the residents learn how to be more independent and how proud they are. But also just the parent piece of watching the fear of letting go. But then when they've lived here for a year or so and they go home at Christmas and they want to come back, because they say, they start saying, I want to go back home. And I'm like, that means we're doing it right.

Valerie 

Hello and welcome to Forever Home for our kids with disabilities. I'm Valerie Mum to two with disabilities, one visible, one invisible. I'm a life coach and an author. This space has been created to help you navigate the journey of creating a secure, sustainable forever home for your child. We'll chat with parents on this path, realtors, financial planners, and other experts who can make the process easier.

Why am I so passionate about this? Because seeing my eldest thrive, living independent of us was a gift I didn't always know I could give. I want you to have the opportunity to explore giving that gift to your child. Hello and welcome to today's episode of Forever Home for our kids with disabilities. I'm your host, Valerie, mom to two with disabilities, one visible, one invisible.

Today our guest is Dr. Molly Sullivan Denny. And Dr. Denny attended Baylor University and earned a bachelor degree of arts with a focus in communication sciences and disorders. She received both her master's and doctorate degrees from Texas Women's University with a research focus on the effects of early intervention on the development of children with Down syndrome and the family dynamics of perceptions of siblings who have a child with special needs in their family.

She worked at the RISE School of Dallas as a lead teacher from 2000 to 2007 and was awarded Outstanding Educator of the Year by the Down Syndrome Guild of Dallas in 2004. Dr. Denny was the Educational Coordinator at the RISE School of Dallas from 2006 to 2009. She has been a contributing author for a book on public school reform titled ‘Yes We Can, Improving Urban Schools Through Innovative Education Reform, and was a special interest author for the Tex-Arcana parenting magazine. Dr. Denny was an adjunct professor for Texas Women's University in the Family Studies Department from 2003 to 2018 and has been the director of community life for Daymark Living since 2015. So welcome Dr. Denny.

Dr. Molly 

Thank you. That's a mouthful. Thanks for having me.

Coach Valerie

You're so very welcome. I'm so glad that you're here. So can I call you Molly? So Molly, tell us a little about your connection to the special needs community.

Dr. Molly

Sure, yeah, I'd love to. I always say this is a calling on my life. So I always felt very drawn to people with special needs. I don't have anyone in my family that has special needs. But when I was a really young little girl, I grew up in a small town in East Texas called Nacogdoches. And there is a college there in town called Stephen F. Austin. And they hosted the Special Olympics.

I don't know if it was the state games or something big. So there was all these people with special needs that came to our town. And I would get on my little blue bike at like seven or eight years old and ride my bike down there and just say, ‘Hey, how can I help?’ And so I just fell in love with this population. And I always in school got selected by teachers to be pals with people. And, you know, just some ways to like spend time in a special ed class when I was in high school. And we had a program called the Pals Program and I was one of the officers. And so one of my class periods was to go to the special needs class and spend time with the kids. So I have always loved them and recognize just the beauty and the joy that they can bring to our lives. And so I really didn't know how God would use those early experiences in my life to lead me to where, what I do now. But looking back, it all makes sense. So fast forward, I went to college, and, knew I wanted to do something with kids who had some sort of developmental delay, but I didn't know exactly what that would be. The funny joke in our family was I was doing a practicum my senior year at Baylor University and I went into a classroom where someone was doing some kind of articulation therapy and I called my dad and I was like, ‘I hate this. I don't want to do this. I think I've made a huge mistake. I don't want to do speech therapy.’ And he was like, ‘Why?’ My parents have spent all this money on school. And I said, ‘I just think there's so much more to kids than just language. I love the language piece, but there's so much more.’ And he said, ‘Okay, okay, fine. Finish school and then you can see. So I graduated with an undergrad, and then decided not to go in and get a master's in speech pathology, and rather got one in child development. And I loved it. I loved all the pieces of children and just how it's all connected. And as I started working with kids with special needs, I really started to be intrigued by family dynamics and just how families interact, how siblings interact, the stress, right, that comes in marriages and just all of that was really interesting to me. So that kind of led me down the research part of what I did. But I'm a people person, so I liked teaching at the university and I love to be able to give back on all the knowledge that I've been given. But now in my current job at Daymark, I get to do both. So I get to work with families, but I also get to work with the residents. So that's my favorite part.

Valerie

Love it, love it. So just curious, Molly, how did you come to get to a focus on children with Down syndrome when you researched?

Dr. Molly

So I worked at the RISE School, which is an early intervention program in Dallas. And the original RISE School is at the University of Alabama. And they have kind of what I would call like a lab school. And they have all kinds of kids with special needs, early intervention, and they have typical kids there too. So kids actually just go to preschool there. You get this really neat combination of typical kids modeling appropriate development for kids with special needs and then the typical kids learn all this empathy. It's a really neat program. So John Poston, he founded Daymark where I am now. He also founded the RICE School in Dallas in Houston. And so that was my first job out of college. And I had a lot of students with Down Syndrome. I had a lot of students on the autism spectrum as well. And so they were little, they were three and four and just learning to hit all of those really important early developmental milestones. That took me on my research path of Down Syndrome and just their development and the importance of early intervention.

Valerie

Wow. And yeah, I totally agree the importance of early interventions. I'm just thinking of a situation where I knew a family who were kind of in denial with their child. He's on the spectrum and they were in denial a little bit. And I had my oldest Melody-Anne at the time who has cerebral palsy, very involved. And I understood the importance of early intervention, like, you know, get, some help right now, not just for your child, but for you too. But it was really difficult because they just were in denial that their child had autism. I wasn't quite sure what it was, but then it started to dawn on me, but I knew that they needed to get some early intervention. So eventually they did, but I certainly have seen from my own experience the power of, and the need for early intervention in our children.

Dr. Molly 

Yeah, well, and one thing I learned too, like when I was doing that early intervention piece, and there's a lot of similarities between working with young children as they transition from being a baby to learning to walk and talk and all those early things, to even what I do now with young adults and teaching them the importance of not being quite as dependent on parents, but being more independent away from your family. There's a lot of similarities in the way that we handle those things.

But there's also a community, I think, when you do early intervention, that if you're just at home trying to do all these things by yourself, those early friends who also have kids with special needs, I mean, you can't replicate that, the bonding that happens between those other moms or even dads. And so I think it's naive for people to think that their kids who have special needs can just function in this, whatever this normal world is.

We want them to be able to do that. But at the end of the day, they still have special needs. And so they need those special needs friends and they need those special needs families so that they can feel connected. Even as they transition out of school into adulthood. You know, those friendships and stuff, they change a lot and people don't like to think about that, that they do. I would, I mean, I have 135 residents here at Daymark and their families all have stories about

their loved one graduating from high school and losing a lot of those people that were really instrumental in growing up because they go on to college, and they go on to trade jobs and all these things. And so, that can be a challenge.

Valerie

Yeah, for sure. So Molly, tell us a little bit about the work that you actually do now.

Dr. Molly 

Sure. So the founder of Daymark called me about eight years ago and said, ‘I have this wild idea to build a neighborhood for adults with special needs,’ for his son. He was 23, I believe, at the time. And he was like, ‘I feel like I can't be the only parent who wants something like this for my son.’ And he was like, ‘If I can pull it off and put it all together, will you come be one of the directors.’ And my youngest daughter at the time was about to start kindergarten. And so I was ready to really jump back in to the workforce. I liked being home with my kids, but I'm a worker bee and like that social aspect of being around others. And I just feel like I have been given such a gift with the experiences that I've had that it's really important that I share this with others. And so I'm like, ‘Yeah, I'll help you.’ So we traveled around different places for about two years and looked at different programs, met with developers, bought land, you know, all this really early kind of steps that it's taken to get us where we are now. So my job has evolved a lot. I did a lot of marketing and talking with parents, asking what they would want for their loved one, picking out paint colors and carpet and all those fun little details, to now really running a community where people live. And you know, our whole goal is independence and thriving here and walking with families through that process of letting go, which is hard. And I've gotten a lot more bold as I've gotten a little older and telling parents, ‘You got to cut the cord, it's time.’ I used to be a little more scared to say those kind of things, but wisdom comes to us as we get older, I guess, and maybe a little less of a filter.

Valerie

Yeah, I think we get to a place where it's like, just tell it like it is. Let's cut the fluff and let’s just get to the point.

Dr. Molly 

Yes, I say all the time, ‘Just trust me,’ right? Like I just need you to trust me on this one thing. And usually we build that rapport and they're able to do that. And I can't even tell you how many times parents, you know, if you've had their young adult living here for three or four years say, ‘Dr. Molly, you were right. You know, I needed to hear that, but it stung a little when you told me,’ and I'm like, ‘I'm not going to tell you that it's going to be easy when it's not.’

Valerie

Exactly, exactly. So as you were talking about the founder and going around and looking at land and talking with parents and things, it's just interesting that you bring that up because Scott and I, my husband, we have had a similar thought and like it would just be lovely to have a community where these kids can kind of feel like they belong because there's more people like them. And we live in Calgary, Alberta in Canada, and I remember just driving out the highway because we're in the last community before you hit the highway to go to the mountains. I remember sort of, anytime we would drive out, we'd see these 160 acres for sale and it’s like, wouldn't it be amazing? And we would just dream about all the things that we would have, like it would be self-supporting, there'd be a store, we'd teach them to garden and all these kind of things. Beekeeping whatever they wanted to do.

I'm so thrilled that I'm not the only one, or my husband and I are not the only ones that have had that thought, but I'm just so thrilled that this dream for this gentleman has come into fruition and it's actually happening and kids are thriving. So I'm just so grateful that it's actually happening. Now we don't have the resources, but I guess this is where marketing comes in and this is where you get good at sort of advocating and talking with people and philanthropists that have the money.

Dr. Molly

Yeah, well, and our system is so broken. The system of funding for these individuals is so broken and so unfortunate. We’re private pay. We don't say we're sorry about that because I always say we're profit with the purpose. No one's getting rich doing what we're doing. We want to be able to pay our own bills and pay our staff in a way that they will stay, right? And want to do this hard work, and just be a resource for others. In Texas alone there's a handful of communities here and all of us are a little different doing different kinds of things. And there are some that have more of that kind of agricultural piece.

And I love that. I think it's so neat that they do that. And I think there's a community close to Houston that has a store and they make beautiful pottery, and they do a lot of those neat kinds of things. And so there are some communities that are focused on different things. And we just kind of said, okay, you, they're doing that, they're doing that. What do we want to be? What do we want to be known for? And we didn't get it all right from the beginning. We're certainly not perfect. And we've changed some ways, just the way we do some things.

I think originally I was naive in thinking that when parents say their child is independent, that that means something different than what it actually means. So independent in your home is different than independent outside of your home. And so I sort of took family's words that, yeah, they're completely independent. And then we got here and we were open for 30 days and I was like, everyone's hair is a little greasy and no one's great at brushing their teeth and they're not really great at cutting their fingernails and like all of these little things that we've adapted for, which we were happy to do that. But I, it's been a zigzag to get to where we want to be. And I think that's just the way it is with anything. It's never been done this way before. So…. We're always looking at ways we can do things better and just make sure that those basic needs are being taken care of and that we're teaching them. That's the big thing. I'm like, no one here is going to do anything for you. You have to be an active participant wanting to learn how to do those things. And so, that's the challenging part. I always say, if I could give a special pill for motivation, then that'd be great.

Valerie

Could you sign me up for that? Because I'd like to give it to my child. 

Dr. Molly

We're lacking some motivation here.

Valerie

The needs of your residents in the fact that, okay, we've identified that they're not great at XYZ, so let's put in some programming so we can get them to a place where they're getting better at XYZ. So I love that. And you're so right. With parents, we tend to do for our children more than we actually need to sometimes. And I think we get into that mode of doing and directing their lives because all parents do this for their children. And at some point, you kind of back off and provide some scaffolding so that they can start to emerge with some independence. But our children with disabilities, or our children with special needs, it takes us longer. And sometimes we don't recognize we need to actually do that shift. So we just continue to do and do and do. So you're totally right with regards to, yeah, do you know how to change the toilet roll paper? Do you know how to wash your hair and then rinse it properly and then condition and then rinse it properly. And like you say, toenails, who would think about, cause you know, you just do it, right? But yeah, so there's so many things. And then even, guess, I don't know whether this is part of your programming, whether the residents get an opportunity to do cooking or not.

Dr. Molly 

I have to go back just a minute on something you said, because this was one of the funny. I mean, we thought it was funny. Our guys when they started, I think we've been open for maybe like a month and we were slowly meeting people and we didn't just open with 135.

And one of my coaches said, ‘Dr. Molly, none of our guys that live here know to change out their toothbrushes.’ And I thought, well, yeah, because they've never had to do that. I mean, she said all their toothbrushes are disgusting. You know, they get crunchy and there's toothpaste packed down in them and they spit on the handle. And I'm like, okay, that's something we could teach, but that's not something at home, right?

We would do that for our own kids. I'm just as guilty of that. So a lot of those really simple skills that at home, you're not going to learn them at home and that's okay, that's what we're here for. We've gotten good at making lists of all those little things and breaking those tasks down into small little pieces so that they can be more independent. Because our guys can learn that stuff. It's just, they're not going to learn it unless we teach them to do that. Whereas your typical kid probably goes to college and is like, ‘Ew, my toothbrush is disgusting, I should go buy a new one.’ And our guys are just, they just keep brushing their teeth with it.

Valerie

As you say that I should go buy a new one, I'm thinking well maybe mom could put one in a care package for me.

Dr. Molly 

Yes, exactly. Yes, that's right.

Valerie

So back to the cooking, so you actually teach them cooking as well?

Dr. Molly

Yeah. One thing that we did, that we did really well was in our home ec room, we have the same appliances in that room as they have in their cottages. So, as they're learning how to adjust the heat, or push the buttons on the microwave, or push the buttons on the dishwasher, they practice that in the home ec room with a coach so that then when they work towards getting those appliances turned on in their cottage, they've learned that. So, just like for us, if I'm used to cooking on gas and suddenly I'm cooking on electric, it takes a little time to adjust. So we wanted to be sure that everywhere in our community that they were cooking, they were doing that. So we have basic cooking classes that are chopping vegetables. We do a lot of classes on safety on boiling water and using hot pads, and how you get things out of the oven, you know, those kinds of things. That's typically what parents are the most worried about is the safety. And they have to go through a 10 week course on getting their oven turned on, we call it oven certification. So the ovens are off when they move in and their roommates, usually there's one that likes to cook and the others don't care much about it, but they make pretty basic meals. There's lots of pasta and things they can stick in the oven. I call it like college food, is the kind of stuff they liked in their air fryer and you know, that's kind of simple meals. So we have one guy who is a hunter and he likes to make chicken fried steak. He's probably our, our best cook. But we mostly just have pretty simple cooking and they feel really good when they get their oven on. It's kind of a big deal to celebrate that now I can cook and do those things in my house.

Yeah, it takes a while to get there, but we have it broken down, like I said, into little bite-sized pieces so that they can be successful.

Valerie

Cool. So what's the ratio of residents to coach?

Dr. Molly

So we have right now, I have 135 residents. We'll have about 190 at full capacity. We have the capability to have 200, but we're gonna need some cottages for storage. So we'll probably end up having around 190, 195. So we're close, close to being full. I think probably the next year or so we'll be there. So our coach to resident ratio right now is about one to 13.

So they're not assigned to one coach. The coaches are here. They work four days on and two days off and the same thing with our nursing staff. So this is kind of a neat story, but we started with just coaches and they were teaching in the classrooms, teaching in the cottages, working on learning how to clean, change your sheets, all of those kind of daily living skills. And then they were also teaching in the classroom. So teaching cooking classes and adult kind of learning classes. And we asked the residents what classes they want. And so like yesterday I had a guy say, I want to bring yoga back. So we're bringing it back. We go on lots of outings and things like that. They like to get out in the community and do fun stuff. So we really let them kind of guide what the curriculum is going to be. And I always ask the parents, what do you, the parents, want them to learn, like financial literacy and stuff. And the residents are like, we want to do arts and crafts, you know, or something fun.

So we learned pretty early on that with the need of the ADL (activities of daily living) side of things that we needed to shift our coaching model a little bit because I felt like we were asking our coaches to be too many things. You know, when you're too many things, you're not good at any of them. And so our director of nursing came to us from the assisted living world, and she had this great idea. She's like, ‘We just need to have two separate kinds of coaches.’ So coaches that are teaching one-on-one and then teaching in the classrooms and then coaches that are working in their cottages on basically hygiene kinds of things. And so we call those domestic skills coaches and they're on the nursing side of things. And so that adds a little more like ratio, it makes a little more people than we typically have here during the day.

They are assigned to different groups and they go in. We do three touch points a day with our residents. Someone's laying eyes on them three times a day. Some are super social and they're up here, we see them all day, but some need that kind of extra oversight.

Valerie

Yeah. Wow. Sounds amazing. And I love that you, as I said earlier, that you're kind of, you know, evolving with the needs of your residents. So the residents, when they come, are they there for as long as they want to be there? Or is there a timeframe that they're there?

Dr. Molly 

Both.

So some families will come to Daymark wanting us to be sort of a transition to living on their own. So we've had some great success stories of people who maybe graduated from high school. Sometimes they went and did like a two year kind of college or trade program. And then they came here to learn those living skills and they're living in apartments on their own, and have jobs out in the community. Obviously a financial component to living on your own too. We have a handful that have done that. Many of our residents will live here until they need that next level of care. So this environment can really work for a lot of different kinds of people with a lot of different needs. Our oldest resident is 65 and our youngest is 19, but our average I think is 33 years old. So most of our residents are in that 20, 30, 40 range. As they age, our population will be older. And if you go and visit communities that we went and looked at, most of them, their population is older than ours because they've been open for a while.

Valerie

Okay. Love it. Love it. Our children with disabilities are living longer due to advances in modern medicine and technology. Such our children, many of them are living with their parents. So can you share with our audience about adult living after high school? And you know, you've mentioned some, you know, your option. So, what other things are available?

Dr. Molly 

I mean like I said, we were in a really broken system and, I'm hopeful that it will shift. Let me just talk about it from kind of a societal standpoint. And I don't know if it's the same in Canada or not. I'm not sure exactly who your audience is, but we went from as a society, kind of this idea of putting these children away. Like you hear these horror stories of babies being born and the nurse says something's wrong with this baby and then the mother and dad never see it again. And they sent them to these homes or these institutions. So we moved from that to, in Texas or maybe federally the government saying, well, that's not really good because that's congregate living and you have too many people with special needs in one space, and there was lots of things happening there that were not good and abuse and things like that. No stimulation, you know, those kind of things. And so I guess at some point they decided that wasn't working, or they got too much bad publicity probably. And so then they said, well, let's just move everyone home back to their families of origin and we'll give the parents money to supplement these therapies or whatever they need. And that wasn't good either, because now we're isolated and you've got young adults living with aging parents. So now young adults are taking care of aging parents and aging parents are aging and they're, you know, so that's not ideal either. To now, but we have state funded programs called group homes and it's kind of what you were talking about, what your daughter is doing where families will come together and they'll buy a home or rent a home in a neighborhood and they get money for that, so much money a day, I guess, to feed people and take them and do stuff and things like that. And then now I think we're sort of coming back to center, like we've done all we've swung from one way to the other, and to where I think as a society we're saying, no, we're not trying to isolate anyone. But like, I hang out with my peer group and you hang out with your peer group, and my church friends, and my college friends, and my mom friends and all that. That's who I spend time with.

So to not allow someone with special needs to be with your peer group can be a denial of who they are. So if I'm the only one in the room who has CP, then in some ways that is isolating because there's no one that can relate to me. But if I'm in a room with five people that have CP, then that's my peer group. And so I think that that's kind of our goal at Daymark is to provide, I call it, like a community in a community where this is their home and we're coming in. So we are helping to guide them through their day and helping them learn those skills that they need. And they really look to us to help them with that. But then, I mean, you could go out there right now and you'd see 20 people sitting at a table and all of them have special needs and all different abilities. So that's their peer group. And I think that's the beauty of  what's being done. And I think that's become more of the norm now. And I think as time goes on, that finally we're realizing that it's not a bad thing. You know, it can be a good thing. No one's locked up anywhere, you know, freely walking around and they have all this independence to go into town and do all these things that they want to do and make the decisions about what they do during the day. They have full choice of what their day looks like here. So, you know, just giving them the chance to make those choices rather than what I see a lot of times when they come from home is; Monday we went to dad's doctor's appointment and Tuesday we took mom to the dentist and Thursday went to my PT class and then, and that's all they did all week. You know, and there's lots of sitting around and lots of watching TV or doing things that that's what older, that's what we do when we're older, not when we're 20 and 30.

Valerie 

Right? Life is to be lived. 

Dr. Molly

Yeah. 

Yeah. I’m just kind of curious about the demographic. You mentioned that there were a few people with varying disabilities at Daymark Living. So what kind of disabilities are you seeing?

Dr. Molly 

So I like to split them into thirds. So about a third of our population has some sort of chromosomal abnormality. So, Down syndrome, Williams syndrome, Turner syndrome, we have some chromosomal deletions, which are really interesting. So these individuals had some sort of very early in utero change to their DNA, which then caused them to have some kind of IDD. So that's about a third of our population. 

Another third is on the spectrum. So we have nonverbal residents that function so beautifully here. All the way up to, I have some who have college degrees. I have a few people here that have master's degrees that are very bright, you know, almost savant-like and just really intelligent, but maybe lack some of the social skills. They lack the ability to live on their own because they forget to pay their water bills and those kinds of things. And then, and just miss that connection like they have trouble connecting with others out in the real world. So here it's just easier to connect I think when it's truly your peer group, and they're very vulnerable. That's probably the biggest thing is just, I mean I could tell you a lot of stories about things that have happened that where people have been taken advantage of some of my residents where they did live on their own. So they may have the skills to do that but they're just so trusting and they get taken advantage of mostly financially you know. 

And then the last third is kind of a mixture, we have quite a few residents with cerebral palsy. I have a few that had traumatic brain injuries. So born typically developing, some sort of life event then led them to having a TBI. I have a few residents that have had strokes along the time of development. So all of that group is what I would consider some sort of brain injury. Like at some point they had some sort of injury to their brain.

And they're a lot of fun, you know they're all different. And so you put all those 135 people together and you get this really neat mixture of people who love each other and look after each other. And I always say, they argue like brothers and sisters. Sometimes they're like, someone says ‘You’re looking at me the wrong way, and you know, those other things, but that's just part of it. And that's how we learn. I say a lot of times there's lots of middle school behavior here, because developmentally that's where a lot of our guys are. So, you can remember back to middle school? That's a lot of what we do and it's fun. It's fun and funny and sometimes tiring.

Valerie

Yeah, I can appreciate that for sure. All right. So I just want to back up for a second. You mentioned IDD. So we're talking intellectual developmental disabilities. 

Dr. Molly

Yeah. 

Valerie

Okay. Just wanted to clarify that for some of our listeners that may not quite understand what that is. All right. Well, thank you so much for sharing. It sounds like an amazing program. I love that it seems to be there's more of them in the States. Like I don't know of many places or if any, certainly not in the area that I live in, that have that kind of an idea. I'm just getting excited here revisiting that and just creating a village for some of these children. You know, we've had a little bit of a taste of what it's like to provide a place where children can thrive with Eden House. That's the name of the forever home that we have for our oldest daughter. So we had a caregiver that we had for six and a half years, which allowed me to continue working, to be a mom to two children and be a wife. And then this caregiver decided that, and fair enough, she was going to move into a different direction. She wanted to work with young children. So after six and a half years, you kind of get to depend on someone. 

Dr. Molly

Yes you do

Valerie

And Scott and I don't have any family close by, so we had nobody else to fall back on. We said, sure, you know, we wished her well, off she went. But then it was kind of like, what are we going to do? We need to have something that's going to be sustainable. Because you get to a place where you are tired of having people in and out of your home. And you have to do the hiring, do the firing, if you need to, do the training, taxes, all of that stuff, all the HR things. And so I was like, I can't, I can't keep this up. Like we can't do this for forever. We are older parents as well. So then we just decided, okay, we need to do something that's going to be more sustainable. So that's when we started to do the forever home thing, but we were in crisis mode. And I just want to say to the audience, don't wait till you're in crisis mode. And why I do what I do, because we need to be planning ahead for this kind of thing. So it's just been so beautiful to be able to create Eden House. Obviously we had a whole lot of help and it's a home to three young ladies that can live independent of their parents and that's the beautiful thing. I can just go and be mom when I go visit. I don't have to be caregiver thinking about, does her feed need to be changed? Does she need to be changed? Do we need to change her position. She's in a wheelchair. She's totally dependent for all care. So it's just been lovely. And not only that, do they get to live independent of their parents, the parents get to just be parents. The other thing is it's a lovely workplace. I think there's about 13 staff altogether because we have staff that are overnight, awake overnight, some sleep overnight, and then the daytime staff. And so to think that we've created that, and it's just, it's a win-win on so many levels. And so now I'm just kind of like, okay, we need to revisit this village thing because that would be a huge win on so many more levels for so many more people.

Dr. Molly

Yeah, and I feel like every child that has special needs has unique needs and unique abilities. And so I think a lot of times people are afraid to try to do something that might only be for one kind of person. But what we learned at Daymark is that the way our environment is set up is, that a lot of different kinds of people can be successful here. So I have some residents who have to get showered every day. I have some residents who their food has to be cut up every day. I have some residents who always think everyone's mad at them. So we have a social component to that. Like everyone's needs are so different and unique. And so to be able to staff for that is a challenge. But I think over time, like I said, we've sort of zigged and zagged to where we can make it work. And so I think having staff that are focused on kind of those daily care things and then staff that are focused on that engagement piece, can be really important. For us, it couldn't be the same person. It couldn't be one person doing all those things. Just like as a parent, you shouldn't be doing all those things for an adult. Your relationship should shift from a parent relationship to an adult child and parent relationship. And when you aren't living at home, it's easier to do that.

I think that's one of my favorite things about my job is to watch the residents learn how to be more independent and how proud they are. But also just the parent piece of watching the fear of letting go. But then when they lived here for a year or so and they go home at Christmas and they want to come back, because they say, they start saying, I want to go back home. And I'm like, that means we're doing it right. That’s what you want, you want them to, that's how we all felt right when we went to college. or when we went home to visit. Like ‘I've had enough of you mom and dad and I don’t want you to tell me what to do anymore.’ Or ‘I don't want to eat green beans, I don't like green beans.’ It's a very natural evolution and I tell our parents as their transitioning I’ll say ‘We're not going to do it like you do it, but that doesn't mean we're doing it wrong, we're going to do it different, we're going to do it like adults, we're going to treat them like adults.

And if they don't want to go to class, then that's their choice. Just like we have a choice about if we want to do things after work or not. And that's not always really well received at the beginning, but over time they start to see this kind of freedom within their adult child of wanting to make decisions for themselves, which is how it's supposed to be.

Valerie 

Absolutely, absolutely. So you mentioned letting go. So can you just talk to us about the family dynamics of letting go?

Dr. Molly

Yes. I have so many feelings about this because it's different for each family. I'll give you sort of the best case scenario. When our children, if you have typically developing children, when they're in about, maybe their freshman, sophomore year of high school, you start thinking, okay, what's next? We've made it through, you know, we're in the middle of adolescence. We've made it through these developmental stages. And now what's next? What's beyond high school? Well, I say all the time, do the same thing with your kids with special needs.

They may be still doing therapies and they may still be needing a lot of care at home, but start thinking about and looking and exploring what are your options? What, what could their life look like? Because it's like taking a test. If you read the answers first, it's easier to go back in the passage and be able to pull out the answers that you're looking for. But I feel like with our kids with special needs, it's the same way. If you go out and see what your goals are, what your options are, then you can come back home and self-reflect and like, are we actually setting them up for this to be an option? Because the truth of the matter is that someone living at home, if they outlive you, which is highly likely, they're going to be in crisis mode. And if you're putting them in that situation, that's not ideal for anyone. And here we've had it always. We've had residents who've come right after high school and they're immature and they have a lot to learn. And we've had residents who have lost both parents in a very short amount of time and their cousin has now inherited them and they're scrambling trying to figure out what to do. And that is very upsetting. It's very disheartening and it’s it's very alarming, I think, for our guys who already struggle with just regulating their emotions and their feelings. That is like the worst case scenario where all of a sudden their whole life changes.

I'll tell you a story. There's a guy who lives in Houston, which is about three and a half hours from here and he's wanting to live at Daymark. I've been doing weekly Zoom calls with him because he has no friends. He's living in an assisted living with his dad and the dad's in a separate room. So we've just, I’ve just befriended him. So every week I make 30 minutes and we have a phone call, and listening to him talk about what his day looks like and the things that he's doing, it makes me so sad because he's doing nothing. You know, he basically lives like from one meal to the next, and he might take a walk and he has no friends. And it's because his parents both got very sick within a short amount of time and his sister kind of was scrambling of what am I going to do? And so hopefully they're working on him getting to come and live here and I hope that he can. But I think there's so many stories like that where they didn't think that that could happen, right? Where they would both pass away in such a short amount of time. But then it's sometimes it does. And so now you've got a 45 year old with no plans and it's just, it's very upsetting I think and it's hard to watch. I think ideally they go to school and then maybe there's some transition programs after high school here that last a couple years, and they get some really good work experiences, and I think that's really the best time to make that jump to living away from home.

You know, rather than just going during the day. And a lot of people do that too. They'll go do like a day program and then come back home in the evenings. And that's a good step, I think. Yeah. So, I mean, some parents are more like just jump all in and jump in with both feet and make it work. But most of them keep them home for a little bit of time after school and then decide they're ready. And it's typically a decision based on loneliness. You know, they just notice that they're lonely.

Valerie

Interesting. Because if you're not pre-planning to what your child's day is going to look like, then nothing's going to happen, right? I think of my oldest, Melody-Anne, and I'm just so grateful that how we've set up the agency that we have that provide the care also take care of the programming. So the funding that we get helps to cover Melody-Anne going out of the home to go to programs or have somebody come in to create a program for her in the home. And so

that's all part and parcel of it. It's easier for me to watch her from the sidelines now enjoying life. She's got something going on pretty much every day and it might not take up the whole day, but she gets to go out and do something. She has a music therapist that comes in. We've had music therapy for forever and we're just so grateful that they still come into the home. But it's just been so lovely just to watch her grow as well as the other girls. They've been volunteering. This child of mine has been places in the city that I've never even been to.

Dr. Molly

Yeah, yeah.

Valerie

She's been boating. This is a child in a wheelchair who has no truncal control. So they've managed to figure out how she can go boating about once a year. The three young ladies go on a vacation together for two or three nights. And so it's just been an amazing thing because she's doing things that I wouldn't have been able to facilitate.

Dr. Molly

Yeah. Well, because you, just as a parent, when you have a young adult, that's not really your job anymore as the parent, right? You get to be as you're aging, we want to be able to enjoy our children. And like you said, watch from the sidelines and jump in if we need to, right? There's an issue like you're there. If she gets sick or something happens, like you're going to be there, but to be able to know that you get to get up today and do what you need to do. And she's going to get up and do what she needs to do. And I think for me, one thing that I'm just always harping on is purpose. We all need purpose. So, it doesn't have, your purpose doesn't have to look like mine and my resident’s purpose doesn't have to look like mine, or their parents. But they need some kind of purpose. You need a reason to get up and do something during the day. And that's the way we're made. You know, whether you have special needs or not, we are made to be productive and be busy and not just let life go by while you sit there. That's not, that's not being productive. I have a guy here that, he loves to sweep. And so recently, and I thought, that's sort of, that could be viewed as kind of a demeaning job. And so we, we walked around this whole thing and finally I said, ‘You know what? I'm going to let you sweep. Every day after lunch, I need you to sweep the front porch.’ And he loves that volunteer job. I thought, well, goodness. I mean, if he, you know, maybe everyone can get so excited about some kind of job like that.

And I'm like, this helps me. Like it helps me that you come and sweep the porch every single morning. It looks so beautiful. And I'm so thankful that he does that. And so having something for someone that's just theirs, that they can put their stamp on it, they can feel proud of no matter what their level of independence is, it matters.

Valerie

Absolutely. And it just gives them meaning and as you say, it just gives them purpose. This is my job to be able to make sure that this is clean and tidy, and I'm sure he does it to the best of his ability.

Dr. Molly

Yeah. Yes. I have a plant waterer too. One of my guys likes to water plants. And so I said, I always forget to do it. And he said, I can do that every single day. And our plants have never looked better because he does it with such care, you know? And for me, I'm like, oh my gosh, I forgot to water the plants today. Just those little things I think can be into more because if we're building on those skills, the guy that's sweeping, I'm like, I really want him to be able to get a job. And so I can't advocate for him to get a job if I've never seen what he's capable of. But now I know he gets up every day and he shows up and he's doing the thing. So when he's going out now to look for a job or when we're advocating with job coaches, like that just showing up and predictability is a job skill. It's something we can turn into more. So that's another big piece of what we do is try to get our guys employed out in the greater community. Just so that they can be around people that are different than them and kind of live in the outside world and then come back to their peer group is to me that's sort of the sweet spot of our residents that do the very best is those that are getting on the van. They're going out to work during the day. They probably work 3 or 4 hours and then they come back in there with their peer group and they're just they're so happy because they're fulfilled. 

Valerie

Yeah. And all aspects of their lives are being met. 

Dr. Molly

Yeah, 

Valerie

Yeah. Love that. 

Molly, where can our audience go to find out more about you?

Dr. Molly

I'm not that exciting, but you can find me on the Daymark website if you go to Daymarkliving.com, you can see all the things about Daymark and there's a little bio there about me. I don't have any of my own podcasts or anything like that. So I just try to help where I can, but you can always ask Valerie where to find me. She has my email if you have specific questions. I'll tell you my email now if anyone wants to email me, It's just ‘Molly (M.O.L.L.Y.) Period. And then Denny, my last name, so molly.denny@daymarkliving.com. 

So you're welcome to email me if you have questions or need any pointers. I'm all about paying it forward. People have been so good to us as we were going through this journey that I'm always happy to meet with people and invite people to Daymark. I would love for you to come see us here and just share what we're doing. And then help people with their own ideas and kind of brainstorm. I'm always all about saying, we tried that and that was not, that didn't work, which is sometimes how we learn, but happy to share all of that with anyone.

Valerie

Thank you, Molly. Molly, just before we close, do you have any pearls of wisdom, any words of encouragement for parents raising kids with disabilities?

Dr. Molly

I have lots. I thought about this. I think kind of my one thing that I want to share is this. Rather than just living day to day and thinking about what we need to do today, challenge yourself to think ahead of what's coming next. And one way that I tell my parents often to do is I know it's hard to find a babysitter, I know it's hard to find people that will care for your child, but it's really important that you and whoever's involved in making these decisions, whether it's your spouse or their siblings, or guardians, or friends, that you set aside time to have these hard conversations. And maybe it's that they can go on a play date with the neighbor for an hour or two and you can just really talk with your people, with your village about what you want to do. So take time to do that. Because rushing from this therapy to that therapy is so important and I'm all about early intervention, but I also think it's really important that parents stop and think, what is our goal? What is our end goal? Because to be honest with you, I don't really care if they can read or write at Daymark. Those kind of those academic goals for us, you can function beautifully at Daymark and not be able to read like the way that these neighborhoods and communities are set up, it's so much more about just that those independent skills. So focusing on those is really important and I could talk all day about that, but maybe that's another podcast.

Valerie 

Molly, thank you so much. And Molly's information will be in the show notes, so please check it out. And I've invited Molly to come back because I want to know a lot more about how we prepare our young adults for living away from families and who should be involved in those decisions. So tune in again, because we will be having Molly as a guest to talk to us more about that. So thank you, Molly so much for being here today. So appreciate it.

Dr. Molly

Yes, anytime. Well, thanks for having me. I'm happy to share whatever I know with you and your listeners.

Thank you. So audience, I want you to keep building your child's future, live with intention and embrace the journey. Thanks for joining me today on Forever Home for our kids with disabilities. I hope today's episode gave you something new to think about and it increased your confidence on your journey. If you found this episode helpful, do tell others about it. Use the text feature to let me know your questions. Tell me what you want to know. Until next time, take care and keep building your child's future.