There is no crystal ball to give us insight into what parenting a child with a disability is like. But conversations with Lisa Richard sure come close.    Lisa is a mother to seven children ranging from ages 18 to 30. Two of her kids have Down syndrome.    Lisa's honesty and insight is refreshing. She is the first to affirm how hard the early years are and will NEVER tell you that you'll miss those days. She's seen first hand that while early intervention and therapy are important for our children, it only does so much. It's OK to do less, to slow down, to just take a moment to take the caregiver hat off and be a mom.    Almost every parent I've talked to who has a child with a disability says that they are a better person because of their child. Lisa is no exception. She also sees how that experience has shaped the lives of her other children in amazing ways. And she shares how her children's disabilities are making her better at her newest role as a grandmother!   This interview with Lisa is our Mothers Day gift to you.    The Odyssey: Parenting. Caregiving. Disability.    The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  https://centerforfamilyinvolvementblog.org/family-to-family-network/   TRANSCRIPT:  Speaker 1 (00:00:07): Welcome to the Odyssey Parenting Caregiving Disability. I'm Erin Croyle, the creator and host. Speaker 1 (00:00:19): The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis was a shock. I had some idea of what motherhood would be like, but parenting a child with a disability, not a clue. It put my life on a completely different trajectory. Working with the Center for Family Involvement at VCUs, partnership for people with disabilities, we provide children and adults with disabilities and their families with emotional and informational support. Instead of returning to a newsroom, I now utilize my journalism skills to share stories about what it's like living with a disability in a society that has yet to accept, understand, and celebrate it. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is, but we don't sugarcoat it for our Mother's Day special. I just had to talk to Lisa Richard. She is a mother to seven children. Two of them have Down Syndrome. Not only is she my colleague at the Center for Family Involvement, she is someone I have long looked up to. Most of her kids are adults now, and not once has she done the whole, you'll miss it someday bit. That is such a slap in the face for those of us struggling to just get through the day. Speaker 1 (00:01:45): Lisa, you are the absolute perfect person to have on for this Mother's Day special. Your perspectives really grounded me through some frantic times, and given that, I wanna start with you telling me and our listeners, if you could go back in time and sit with your younger self ahead of having your first child, what would you say? Speaker 2 (00:02:05): Well, first of all, Erin, thanks so much for having me. I'd really appreciate you inviting me on the podcast today. You know, it's such a significant question. I mean, the first thing I mean, is I would tell myself this journey is gonna turn out just to be more amazing than you ever imagined in ways that you never imagined. You're gonna have to learn a lot. You're gonna have to change your worldview on pretty much everything. But, uh, it's, it's gonna be okay. And it, it has been, it's been better than okay. I mean, my, my life now, um, despite it not turning out in any way that I thought it would is, is just really remarkable. And, and I owe a lot of that to the work that I get to do every day. And the children that I get to parent, Speaker 1 (00:02:54): I feel the same way. I, I can remember vividly when my son was born and we didn't know, and all of a sudden, you know, the Down Syndrome diagnosis was there and I was so worried, you know, I just was like combing through everything I could read, and I was devastated. But deep down, I knew it was gonna be okay. I just had to ask people around me to give me space to mourn and grieve and, and wrap my head around the fact that this is completely different and this child is gonna need me their entire life. I mean, you are kind of in that point. Um, can you tell us a little bit about your kids and how old they are and where you are in your life? Speaker 2 (00:03:39): Y you know, it was a very similar experience for me, Erin. I, I did not know. Um, Zoe is 30 years old now, and in a couple weeks she'll be 31. And so when she was born, she was our first child and she was the first gen child, uh, grandchild on both sides 30 years ago. This was considered to be a very traumatic event, and I'm not saying that might not still be for some people today, but back in the day, this was when the life expectancy was still 25 years old and children were not getting life saving surgeries that they needed when she was born. Um, my worldview and, and the one that I was brought up in was that, you know, your intellect is everything. Whatever you don't have in this world can be made up with trying hard and, and having smarts and, and really pursuing and achieving. Speaker 2 (00:04:33): And so to have a child that sort of instantly deflated that worldview was so overwhelming to me, I completely shut down and was pretty much shut down for about six months. And I mean, that's a whole story in and of itself. They sent a nurse home with me. They were very nervous for me, but I was asked if they wanted, if I wanted to put Zoe in an institution, um, wow. At that point. And, uh, we had decided no, but things got increasingly better as I just started to fall more and more in love with her. I mean, admittedly, I would go out in public and try and hide her because people would say things to me and had some very cool things said to me when she was just a small baby. Um, but as I realized that I was being put in a different situation, I just kept thinking about how can I look at this differently and how can I look at her differently? Speaker 2 (00:05:33): Anyway, I mean, that's a whole story in and of itself. And we've talked about, I ended up pursuing, uh, toys or us had just decided to start using children with disabilities. And I went to a place that said that they did modeling head shots like this, you know, cheesy place. We lived in Connecticut at the time, and you know, she was 18 months, and I just thought she was the cutest thing in the world, and I felt like the needed to recognize that our children were more alike than they were different. And they refused to take her headshot. They wouldn't do it. And we got into this big argument about it, and I just said, well, what would the process look like if we did do it? And they said, well, you know, they explained it. And I said, well, let's pretend she doesn't have a disability and do it anyway. Speaker 2 (00:06:17): And I said, it's their grandparents' money. Just spend her grandparents' money. What's, what are you hurting? Of course, literally within two days we had gotten a call from toys and she was in the first ever catalog that they did. And it was at the time. It was specifically for children with disabilities, but it was really groundbreaking at the time. And so that really started my advocacy in recognizing that if I spoke up and, and I was able to really possibly change a worldview that I felt like had been correct for a while. And I ended up, oddly enough, Erin, because I'm pretty much of an introvert, but I ended up with this group of women that I don't even know how it happened, but it was when I first recognized that if you were with people that were in similar situations, it could just quite possibly save you. Speaker 2 (00:07:09): And I, I don't say that, you know, lightly. I felt like it did. And there were three other women in this group that had just had babies with Down Syndrome. And so just to, we all had different experiences. Some were having heart surgery or looking for it because their hospital didn't offer it to babies with Down Syndrome. They were possibly just being monitored. But having and knowing people that were like me made all the difference after a lot of, um, for us thought and prayer, we ended up deciding to have another baby, and then we had a, a third child after Delaney. We thought possibly our family was complete at that point. And then we made the decision to adopt a baby with Down Syndrome. We heard about a baby in Connecticut that had been left at the hospital after his parents found out he had Down Syndrome. Speaker 2 (00:07:59): And, um, we had the good fortune to adopt Camden. But, you know, at this point, I don't want listeners to like think it was so rosy and exciting and like, I just loved being a mom to a kid with Down Syndrome so much. It, it was more about, um, just for me and for other people recognizing, gosh, their value and they're fun and their, but I was really nervous about it. I was terrified. In fact, in fact, every day I was like, why am why am I doing this? This was probably the most insane thing I've ever done because Zoe was relatively healthy and Tim had multiple health issues. And, um, he had a family that was very devastated. It was an open adoption. So I knew I was inviting like another family into our lives. Berkeley at the time was only eight months old, and so just even the thought of it, Zoe was only six and Delany was two and a half. Speaker 2 (00:08:58): And, and so bringing this other baby, and there's a picture of me with all four of them on my lap, , and I just look about as terrified and nervous as any human, um, ever. And so Cam seamlessly just like moved into our family. And then about, uh, three and a half years later, we found out we were expecting twins. So that was a real surprise. And, and then three years after that we had my daughter Sarah. So right now there's 12 years total between all seven. Zoe is 30, and then my youngest Sarah is 18, and she's just about to graduate high school. Speaker 1 (00:09:39): Wow. When you were speaking, I automatically had two questions, but I wanted to wait. One what? I can't imagine, what would someone say about a baby? I mean, my son has gotten looks and it just makes my blood boil. But what, you've mentioned someone saying something about Zoe as a baby. Speaker 2 (00:10:01): Oh, yeah. Well, again, because of the time 30 years ago, I had a woman approach me in a bathroom, uh, once at a restaurant. We had her, she said to me, um, that, uh, she hoped that if this were to happen to us again, we would make a different decision and not to have the baby. I just was like so shocked. I remember I didn't even say anything to her. I've never forgotten it and have gone through my head all the things that I would say to her now. But, you know, more or less, she just basically told me Zoe had zero value and no worth, and, and that I should, if possible, prevent it from happening the second time. That's Speaker 1 (00:10:44): Shocking though, because 30 years ago is still, I'm not great at math, Lisa, so, but tell me, nineteen ninety, ninety two, Speaker 2 (00:10:53): She was born Speaker 1 (00:10:54): 1992. I mean, for you and I, okay, it's 30 years, but that still feels pretty modern to me. Yeah, Speaker 2 (00:11:01): Right. No, I mean, yeah, we're not talking 1950s or sixties. Um, yeah, no, it was, and it even surprised me and people would just make comments under their breath, different things that they would say about her. I noticed it mostly in the first three months, but partially because I was listening. I mean, you know, after she was six months old, I didn't care, didn't listen, took her out, and was really proud of her and excited to kind of, you know, what, I almost treat as this new learning experience with her, like this opportunity. But I mean, I have grieved for her at all different stages of life. Mm-hmm. when her older siblings learned to drive, and I knew she never would, and they started to leave the house. And, um, I knew she wouldn't be leaving anytime soon when they started college. Um, just so many experiences that possibly some young adults get to experience with Down Syndrome, but Zoe did not and Kim did not. Speaker 2 (00:12:06): And so it's, it's an interesting thing how you feel like you're in a good place and then all of a sudden a life event will happen that makes you realize how different your situation is from everybody else. And sometimes it's a life event in your own family, and you're excited for that child to go and do and learn and drive and get their first job at 16 that, you know, all my kids did. And those weren't, you know, the similar experiences for Zoe and Kim. And so that sadness, you know, in the back of your mind, there's always that little bit of sadness that I don't know that I wish things would've been different, but I wish the world was different for them, that people were more accommodating and wanting to hire them. And all the things that, you know, the difficulties that we face with them since they've become teenagers, I mean, we're, we're in a really pretty good place now. Um, but that doesn't mean tomorrow I might be sad all over again. Speaker 1 (00:13:12): You and I have talked about this before and I think that most people listening who can relate to these situations, we do. We know those waves of grief. It, it's at the first diagnosis or another comorbidity, those dual diagnoses that we so often see with one disability or, I know I personally have a really hard time with my brother's son who's almost the same age as my son. And just seeing milestones and things that just will never be, it was harder earlier. Now it's easier, I guess. But it's interesting because when you mentioned finding space like a safe space with those friends who also had kids with Down syndrome, that's why I find myself gravitating towards friends that also have kids with disabilities because it's just such a different experience. It's a safe space for me where I know if we're hanging out with our kids and they do something that isn't, as you were saying, accepted by society, we can just not, we look at each other and we understand. Speaker 2 (00:14:20): So true, so, so true. I was recently at a wedding with Camden. He was standing in the back with his headphones on just rocking out, which I, you know, would typically let him do. But because we were at this function, I knew there were people videotaping. And I just got that sense of like, my gosh, instead of letting him be, I was like, how do I make this better? How do I fix this? Like this worry that I'm putting other people out, which I usually don't feel, but this event, you know, it was a wedding and um, I walked up to him and, and he just was, you know, singing and . I just was like, well, do I say something? Do I not say something? You know, I ended up kind of tapping him on the shoulder and told him he needed to be a little quieter. Speaker 2 (00:15:11): And you know, again, it's just like, because I could see everybody staring at him and I don't know, there's just so many different experiences. I have a million of 'em. Some have been really interesting ones and some I would laugh off now, but it's been a real journey with the both of them. It's not easy, but I'm a better person. I'm grateful every day for what I've learned for the people I've met. I've just met all kinds of people I would've never known, just been involved in things I would've never been involved in. I mean, it's, it's truly been life changing, but, but it's been hard. Speaker 1 (00:15:45): Yeah. And I wanna, I wanna dive into that a little bit because like I mentioned in our intro, you so often remind me and where we work, everyone has a loved one with a disability. You remind the parents who have younger kids, it gets easier. These years are hard. Don't feel like you need to look back on them as if they were great because they're so hard. So let's talk about those hards. I want to hear about the hards and also the loss of joy of parenting we get, because those societal expectations put on us as soon as our child's born, they enter early intervention, which is amazing, don't get me wrong, but in a lot of ways there's still this fix your kid mentality instead of Yeah. Instead of just letting them be. And you've often used the example of being able to see your oldest Zoe and then Cam, and how all the therapy in the world, it doesn't always matter. So I'd like to hear more about the hard and the societal expectations, but also how society makes us lose out on, on those joys. Speaker 2 (00:16:55): So you're absolutely right, Erin, because I, I mean, I feel like even now we're, we're very deficit focused on how to fix and you know, we benefited from early intervention. I, I think one of the greatest benefits for me was not necessarily any therapies that I received, but just that they came in and talked to me and gave me great parenting skills, like skills that I was able to use with all the rest of my children. This conversation that you're talking about. So like, if you take somebody that's super achievement oriented and is always really focused on doing the best and working hard, and, and so I, when I had Zoe and when I sort of overcame the trauma and the shock of that, I was like, wow, this is just gonna be the most adorable, smartest child with Down syndrome ever. You know, which of course I look back on that now and just sort of see the ridiculousness of that. Speaker 2 (00:17:53): But I mean, we did put Zoe into all types of therapies and she rode horses and I mean, we were just really, really busy and involved with her. And so you fast forward to when we adopt Camden, uh, I now have four children under the age of five poor cam, like, as far as like therapies, like they were so minimal what he, he did get early intervention, but no equine therapy, you know, you know, like all the different things we did with Zoe and there, I mean, it's just so many, anything that was available to her, like we signed her up, you know, I'm not saying I'm not glad I did that, but you're right, like this sort of loss of time of just enjoying my baby, like everything I did was focused on, I remember being a McDonald's and there was a baby drinking out of a straw. Speaker 2 (00:18:46): I don't know what it was drinking, cuz I don't know why baby should be drinking out of a straw McDonald's. But I walked over to this parrot and was like, so excuse me, how did you teach your baby how to drink out of a straw? And I remember her looking at me and she's like, I just stuck it in her mouth and she like drank. It wasn't until I had my second daughter Delaney and was able to put a straw in her mouth and she just drank that. I'm guessing for you too, like if it's your first baby, you don't really know how behind they actually are until you have a typical child and you're like, oh my gosh, they're walking their, they just kind of do things magically it looks like because all the effort that I put in. But so back to my original, you know, story where Kim received hardly any of the therapies, he, for lack of a better term, just is, is much more capable of doing things for himself. Speaker 2 (00:19:43): He's moving about the world. Like I'm thinking of all the therapies that we provided for her and the, and the minimal therapies that Camden got and yet his ability to navigate understand money, like all the things that we tried to get Zoe to do through these different therapies is just like far superior to her. It's, it's just so interesting to me and I feel like sometimes I lost time, you know, and I'm not anti therapy or anything, but I don't know that I would've been so focused as I was like using every minute to try and make sure that she was better or could do things differently or just always like trying to catch her up. I felt like when I was, I was trying to be parent this recognition now at 30 that she's one obviously not gonna catch up and why was I winning her to catch up? Speaker 2 (00:20:42): I mean, gosh, Zoe, everywhere we go, everybody knows her. Everybody loves her. She is most times in public selectively mute. And so we use a thumbs up, thumbs down kind of paddle. We use low tech for her to kind of say yes or no, talks up a storm at home, but we thought it was due to social anxiety and so, you know, we looked into that but it, she just won't speak in public. She is just loved for all that she contributes in whatever way she contributes. And this need for me to make her something different than what she was, that makes me sad. Like I wished many, many years ago I would've just stopped really pushing her to be something other than she was. It's, it's a really tough conversation Erin, because like I said, I'm not anti therapy and I'm not against making sure they have every opportunity cuz I've done that for all seven of my children. Speaker 2 (00:21:40): But certainly Cam had way less opportunity than Zoe and you know, they're just, they're gonna come with their talents and their strengths. I mean, if you would've told me who would've done better as just far as like as the way society judges, I would've told you Zoe, she was the first and she had every opportunity and we were able to throw everything at her and, and Cam was just like, did, was he fed today? Uh, did you know like, uh, what time's his bedtime is he dressed? Um, when was the last time we bathed him? You know, those types of questions when you have that many little kids, I mean, you know, you had a whole group under a certain age as well, Erin, and so like the questions, it's about keeping him alive and he just does so remarkably well. I mean even we are amazed what he's able to do. Speaker 2 (00:22:30): So it was a real sort of interesting experiment if you wanna call it that, that I never planned to have or never thought about. But just as the years went by, he just continued to surpass her and what he was able to do. It was just so interesting to me that, you know, would be the lesser amount of time and energy than we were able to give him. He still did so well. And then, and, and I've seen this in, in some of the other families where there have been parents that have said, you know what, we're just gonna provide the basic supports of the family because the child was the birth order of like the third or the fourth, like Camden and they just didn't have the time and the child did really well or the child did poorly. And the parents like, oh, if I'd only done, and I'm like, you know, I don't know, it might not have made as much of a difference as you thought. Speaker 2 (00:23:23): I feel like we have all this guilt around am I providing enough, like every day am I providing enough to make them the best that they can be? And it's not that we don't have those conversations around our typical children, but it's not like this burning question like, if I don't provide enough, they're not gonna be able to live on their own or do all these things that, you know, we would hope that maybe they would be able to access at some point. And, and how as a society we value independence so much. Like so important to go off somewhere live on your own and be this or that and, and why that's so important to us. Because in other cultures it isn't, family members never moved more than a house or two away. And so I even just like as a culture, I think in the states, we just tend to really value independence so highly and, and so Cam is very independent and Zoe is not. And so in our culture she's looked at not being able to do as much, but everywhere we go, she's the one that everybody talks to that everybody needs to. And it's not that they don't love Cam, but it's just remarkable what she's been able to do with what society would say is very limited abilities. It's just completely shifted the wagon with everything, especially in the disability. Speaker 1 (00:24:42): You really hit the nail on the head when you talk about culture. Lisa, I feel like Americans were so achievement focused, like what can you contribute? What can you do? And time and time again, I find myself overcoming my own ableism with my expectations. And I want things for Arlo that I'm not even sure that he cares about him reaching his full potential isn't the same as my hopes or expectations of him. And I think part of this is because of the whole inspiration porn that we're constantly fed where we're fawning over these stories of people with disabilities overcoming their disability. That happens I think within our own little disability bubbles, probably more so for parents than people with disabilities. So for example, when Arlo was born, you know, I kept looking, trying to learn about Down syndrome and then I saw these leaders in the Down Syndrome community and one of them is a really good friend of mine, David Egan, just an amazing speaker and he's spoken at the UN and done all of these things early on in my son's life. Speaker 1 (00:25:44): It was just like, okay, well if I do the speech therapy and I do the learning program and I do this, he's gonna be able to do all those things too. And I just hit a wall, I put the pressure on myself thinking Arlo's not speaking clearly at 12 because I didn't do enough or he's not reading yet because I didn't do these things enough, but I'm now seeing that it's not about me, it's about him. Like he just does not want to work on these things and some of these things are harder. And you know, I asked you about turning back time, but I look back at like all the therapies that I took him to, but then I also dragged his younger siblings to where I was stressed trying to like beat, you know, we lived in Northern Virginia at the time, so trying to beat the DC traffic to get to aquatics and speech therapy and then my two year old's naps were all messed up and I was killing myself trying to live up to expectations. Speaker 1 (00:26:50): And I think we as parents do each other this disservice by not just being honest and saying, you know, you meet one kid with Down syndrome, you meet one kid with Down syndrome, you meet one kid with autism, that's one kid with autism. And we're constantly putting the valedictorians of that community on these pedestals and it's, it, it sets unrealistic expectations, which we should celebrate these people. Sure. But that it's doing a disservice I think, to our children because we're putting pressure on them to do something that, that I don't not sure they care about. I don't know. I mean I think that's why your perspective is so valuable because you have this living example in your home of doing all the quote unquote right things and then just letting it be, I, I don't know, I, I wish that we could have more honest conversations and I think especially as mothers, any inadequacy of our children is automatically put on mothers either from ourselves or from society. Do you feel that sort of pressure as a mother or are you able to let it go at this point? Speaker 2 (00:28:07): There's sometimes that I do still feel it. My, my children all follow on Instagram, multiple families that have children with Down syndrome or they follow adults with Down syndrome. And, and usually these stories are remarkable. These either as children or young adults, they're modeling or doing really significant things as young adults or teenagers and my daughters, you know, bring to me in like, look at this and, and there'll always be this moment of like, oh my gosh, maybe I didn't put enough time into it or effort or maybe I wasn't just aware or just the many kind of rabbit holes that all fall into when I see those things, which I didn't have. Like you guys are kind of in a different situation because I, you know, I didn't have social media that I only had me and the few people that I knew. And then of course the really antiquated books that I read. Speaker 2 (00:29:04): So there was no real push. I mean I think mine was an internal just because of who I am. It's really unfortunate because I feel like part of why we do that is because it makes society more accepting of them. Like, wow, down Syndrome is cool because they really can do so much, you know, and is it as cool when they're not doing as much or they're doing something that's considered embarrassing or whatever. And there's this one young woman that my daughter follows and she's just such a beautiful girl and she's really trim and she's learned to drive a car and just like all these things. And I'm like, oh my goodness. But I mean, at the same time I I, I understand it and I realize that parents are possibly doing this because it does help. It's like your typical children, if you have a really bright child, schools really wanna help that child and wanna, you know, the smarter the whatever they are that people really kind of rally around that. Speaker 2 (00:30:09): And so I, I mean, I can understand why it happens, it's just unfortunate to some extent because in finally letting go of my expectations and Zoe and like you said, focusing on things that matter to her. Like what is really important to her because that's what she's good at. What she, what she, what's important to her is what she ends up being good at. Cuz that's what she'll focus on. She is a master crochet. We've tried to have her teach people how to crochet, but she's so fast you can't learn from her because she's just so fast and she makes all these really interesting patterns and colors and, but she loves creating. And so focusing on those things as opposed to like, do people understand her speech all the time? Is she learning to do the things that everybody else says she should be learning to do? Speaker 2 (00:30:56): And really focusing on her creative side and the cool things that she's able to do when she crochets. And the more interesting part is sometimes Erin she'll make these just like crocheted squares, right? So they, I mean it's a square, the interesting colors and she'll give them to people and I'm always like, oh my gosh, okay, she's given one of her squares away. The responses are so interesting to me. So first of all, everybody tries to make it into something. Oh, I'll use this as a pot holder or I'll use this surf or whatever. And then they're always so grateful. Like, I'm just amazed at how grateful and how fun those interactions are with Zoe because people are appreciative of her efforts. People don't normally just give things to people and, and they're always like, wow, that's so cool. Thank you for thinking of me. Speaker 2 (00:31:49): You know, it's just true. Like try and force 'em to do things that they don't wanna do and yet, gosh, their talents would be so much better used elsewhere in the ways that they wanna direct them. But as a parent it's just really hard to let go and it's really hard to let go, especially if you're in a school that's saying, we need 'em to do X, Y, Z or you're in a doctor's office, it says we'd really like 'em to be able to achieve this. I mean, it wasn't really until Zoe and Cam got outta school, which is its own sort of traumatic thing of transitioning into adulthood that I was able to let go and say, well what, what do, what do they want? Not like, what does everybody else want? What does a school want? What of all the therapists that they had at school want? And what is it that's really important to Zoe and Cam in looking at those things? And it, it's made a big difference for us. Well, Lisa, tell me a Speaker 1 (00:32:38): Little about that. As any parent knows, you blink and oh my God, they're 12. Yeah. And I, you know, now I know I'm gonna blink and my son's gonna be graduating from high school. Yeah. And we hear a lot about the transition cliff and I think we like to think it won't happen to us. So tell me a little B bit about that and kind of how you navigated it and how it's going because it's still going even though Zoe's 30 and Cam's 25, I assume. Speaker 2 (00:33:10): Yeah, it is. Um, it was, uh, it was really hard. And again, that was one of those periods of grieving again, because recognizing that the state we're in doesn't offer a lot of supports. Neither of them. They've been on the waiver wait list for years and still hadn't been able to access it. And I don't know that that would've even been that helpful at that point in time. What I missed was, and what they really missed was the structure of their everyday life because structure's important to them and it's important to a lot of people and they no longer had it. And Zoe didn't quite understand why she couldn't go back to school. I mean, she grasped that she had graduated, but it's kind of an abstract concept. And so, you know, she wanted to go back. She missed her friend, she missed the people, she missed the interaction. Speaker 2 (00:33:59): And um, and so grieving around that and what was I going to do for her now and how would I provide some sort of everyday stimulation for her? Like where would she go? Wasn't like she had really close friends, unfortunately that hadn't left to go on to school. I mean, there's lovely people in her life, but they live their lives and eventually they end up moving or marrying or, you know, over the course of many years since she's graduated, even those that are most well-intentioned move on to something else at some point. And so this has probably been the greatest challenge I feel is, is how to kind of help them create a meaningful life after they graduate high school because they're, there's nowhere to go. And that's been real tricky in saying all of that, focusing on the things that are important to them. Speaker 2 (00:34:55): I mean, I've really discovered some interesting talents that they have that I probably never would have. Kim is a master at editing videos and he is like the keeper of all of our get together a lot. I have kids all over the country now that have left to go to school and they're doing multiple things. And two of my children are married and anytime we're all together, which is as much as possible, Kim's taking videos and he's editing videos and photos and he puts them in our group chat and we have just all these like great memories because Cam has done these remarkable videos of all of us and used a really sophisticated sort of editing software to do it. My kids have all incorporated things that Zoe's made for them into their lives. They're on their refrigerators or hanging up in their rooms, or she's making like a small lap blanket for them. Speaker 2 (00:35:51): And they have that. And this crocheting that she does has really kind of been such a bright spot in all of our lives because she'll give them as gifts and at Christmas and different things. And we have been fortunate enough in our community that we have a nonprofit that now does multiple things for young adults with disabilities. And so they're kept very busy in something that they are engaged in and love every day. And that has made a big difference. But I recognize so many families don't have that. We just were really fortunate where we live. Speaker 1 (00:36:27): Yeah, and I wanna touch on that too because, you know, you mentioned the waivers and I think something that no one realizes unless they're in it. I know that none of my extended family can even fathom what waivers mean and understanding like you're waiving your right to live in an institution, but there's so many funds out there. So the funds are for community-based living, but Virginia's wait list is, is it tens of thousands long? I mean it's, Speaker 2 (00:36:55): It's about almost 15,000 now. Speaker 1 (00:36:57): 15,000. And so, you know, I relocated from Virginia to a state where there is no waiting list and you can get a waiver, but it's interesting in any way, like us as parents and you as a person, Lisa, like the way that our children's disability will impact our lives forever. I know for my husband and I, I'm not sure we'll ever leave the state that we're in because of what my son gets to that waiver that he absolutely needs because, you know, he is not gonna be able to function in our society the way that everybody else can. So he needs those supports in place that provides for personal care, attendance and support staff and medical care. And so how has this impacted you and your life and how you're handling your future and the dreams that you had for yourself as you grow older? I, I think that it transforms from the time that they're born. And so it feels like it's a given, you know, by the time you're where we are, I know I will probably never live in Europe or wherever, like I'm here , whereas before I might have like retired to Costa Rica or wherever. Yeah. You know what I mean? Right. Speaker 2 (00:38:17): Yeah. No, Speaker 1 (00:38:19): We talk so much about our kids because there are everything and we're mothers. Yeah. But what about you? What about your dreams and how those have changed and how you're finding joy in your dreams, the way Speaker 2 (00:38:34): That they've been modified? Oh, it's such a great question Erin, because I'm really adventurous person and I love to travel. And so there have been many times where I've just thought about, this is a horrible word to use, but I feel trapped somehow in the state of Virginia. So Camden has gotten the waiver now and Zoe's on a medical waiver. And the thought of leaving the resources that we do have now is just really scary. And I'm not saying we couldn't move to another state and access a different waiver set, um, but these are the resources. I know we waited a really, really long time to get them. I have friends that are empty nesters now that have sold their homes and moved to other places that were sunnier or near a beach or on a lake and, and I am just like, you know, again, that was, I don't wanna say I grieved, but just that realization that, uh, that would probably not be mean. Speaker 2 (00:39:36): That we are gonna stay where we're at. I mean, certainly we could move where we wanted in Virginia, but even that gets interesting because different parts of the state access resources in different ways and you know, is that a good place to go? Is that actually gonna work? Like you get nervous about leaving because you know what you have here and is it gonna be better or worse? And especially as they get older, and Zoe and Kim have learned to love where they're at and they have people that they love here. So it's, it's an interesting question. I look at it differently now, you know, as I've gotten older, I'm in my mid fifties now, and you start to appreciate things in a different way. Mm-hmm. those things that were super important to me about leaving or doing or going have sort of transformed into, do I have peace in my life? Speaker 2 (00:40:31): You know, are there good people in my life? Um, I able to see my children as much as possible. Those things have become almost more important to me now. You know, I always say I wanna, and of course I can say this to you because you'd understand, I always like, I would love to live one day longer than Zoe, you know? Yeah. Um, one day longer than Cam, just to make sure that they're okay. And that's probably not gonna happen. I, I value different things that I valued maybe 20 years ago or even 10 years ago. I am more content, I think with less the adventure side of me will always wanna go and do. And, and that maybe will be a loss for me. But again, I feel like I've gained so much more. I've learned so much and just been so privileged. I feel in different ways. Speaker 2 (00:41:24): In some ways it's been really, really hard. But, you know, cam, when he was little, he ran away all the time. He had a little issues. I thought I would never live through it. We had the police called on us, he, he hit in a hot van. A neighbor called the police on us and we were threatened to be taken to jail. And, uh, we live on a creek and I thought maybe he was in the creek. I mean, I just can't even tell you the times where I was hysterically upset, traumatized by our lives just because of their disability and how it manifested itself. Zoe was not a runner, but Cameron ran all the time and we didn't even know where he was going. I don't even Cam knew where he, he had away from school once and was two miles up the road on, on an, an interstate. Speaker 2 (00:42:12): And the police department found him down running down the road. I mean, there's just been so many times that this has been so, so hard. I mean, it's still really, really hard. I mean, there are days that are really, really hard, but that's kind of what I'm saying. Like having some peace and knowing they're happy and good and my other children are happy and good. Those are one of the things that are most important to me now. Not that I still don't hope to travel and do all those fun things, but it's just changed a little for me. I think Speaker 1 (00:42:42): Lisa, everything you've said is just so powerful and spot on and I just find myself clinging too when you said you wanna live one day longer than Zoe and one day longer than Cam. And I'm having a hard time keeping my composure. I don't think I've ever heard you put it that way before. Um, and that's a lot for us to live with as parents because I don't think you're alone in that. I know that you're not alone. It's something we hear repeated over and over by our peers, uh, by fellow parents that are in similar circumstances. Speaker 2 (00:43:23): That's right. I mean, am I right? Like that's it one day longer. That's all I wanna do. So I do, I do think about it a lot. You know, how long I'll live, but I'm like, well if I could live to 84, you know, then Zoe would be six. Maybe she'd be okay and may maybe I'd know that she was already, but you know, I don't know that any age will be enough for me, Erin, that I'll be comfortable leaving Zoe and Cam because in some ways it's like leaving children behind. Um, you know, and I don't mean to insult them in any way by calling them children, but because they're always gonna have to have people look after them. It's, it's hard and it's sad and Speaker 1 (00:44:05): It's this interesting thing where, um, it comes up constantly with us. This is part of why I gravitate to friends who are in it because this is something that most people, you don't have to think about every day. Yeah, of course. It's a fear as a parent, we have to outlive our kids. We want to, because we know that the supports aren't necessarily there. I mean, it's just something that, that was one of the first things I read about life expectancy and Down syndrome. And I know a lot of parents with children with different disabilities, the life expectancy is lower, but you know, there's still that cusp of like, will I outlive my kid? And the devastation of that, will they understand losing a parent? I mean, this is just this unspoken horror that we have in the back of our minds all the time. Speaker 2 (00:45:07): Yeah. Speaker 1 (00:45:08): Um, and I think we need to talk about it more. And I hope that by building community and being open with these things, maybe we can help each other in that or help fix some of the errors or flaws in our systems. So this doesn't have to weigh so heavily on parents like us. It is such a struggle. You know, our children require a lot of care and a lot of assistance in activities of daily living as we call ADLs. Right. But we have friends, we have colleagues who it is total care Yeah. Whose backs are going out because their children are becoming older and like they need lifting. And it, I mean, where do we find help for this? Because community-based living should not heal the parents. Like I, like I I I wonder how we change this. Speaker 2 (00:46:12): Uh, I don't know, Erin. I mean I, I feel like we're so fortunate cuz we're in such a strong community of colleagues and friends and people that know some of our struggles. But at the same time, you know, I was talking to my a adult daughter the other day and she's in the past said that she is really, really comfortable with taking either Zoe or Kim or both if we're unable to get them into a situation where they're able to live even semi independently. And this past weekend, she doesn't even know this, this past weekend she came in and she was talking about how she was saying about living in Tennessee cuz they wanted to buy land. And I, unbeknownst to her, instantly panicked because I'm like, well that means the loss of their waivers and then that means you're no longer a viable option to me. Speaker 2 (00:47:10): Like it became this really weird conversation in my head that I would never have otherwise. And I didn't say anything to her nor would I because I would don't wanna change her life trajectory. But it, it really scared me and all of a sudden pulled out a support that I was just like sort of banking on and thinking about. And I don't know what the answer is, Erin. I don't know that there is, it's just a lot of trust and hope and systems maybe will get better. And you know, you've asked me many times about, and I'll try and say this without getting emotional, you know, when I look back when the kids were little, I was completely overwhelmed. Cam was running away, the twins were running everywhere. Um, I was trying to figure out how to help Zoe with different things and, and, and then trying to fulfill the needs of all my typical children and all that they wanted to do. Speaker 2 (00:48:14): And I have adamantly, as you know, said, I will never look back on this time and say, oh, I wish I could go back to this because I would've so many people come up to me and say, these are the best times. I'm like, really? I haven't showered in three days. I haven't slept in probably years. Um, I mean literally went through years where I probably never got more than three hours of sleep at night. And so now that I'm on the other side of that, that's super intense caregiving. I don't miss it. It was, it was a lot. And I was lucky to live through it. Quite honestly, what I miss her is thinking that I had time and I realized my, my time is getting shorter. That's what I miss. I miss more time to figure this out. Like how do I figure all this out? Speaker 2 (00:49:05): How do I, how do I make it work for them so that they're happy and loved and my typical children are able to enjoy them as siblings and not as possibly people that I need them to take because I don't know where else for them to go or how to set this up. I mean, there's just so many questions that I still have and there's, you know, there's lots of great programs and there's circles and all those things that we're supposed to look at and like in the inner circle, in the outer circle and who are the people you trust and, and all that stuff. And yet one day your child can say, oh, you know what I'm thinking about living in a different state. And then it completely changes what you thought was gonna happen. And so I don't miss every day like being so overwhelmed and traumatized by like my many caregiving tasks, but I do miss feeling like I had more time to manage what would be coming in the future. And now, I mean, my youngest isn't even for college this year, and so it's just gonna be myself and Zoe and Cam. So I'm hoping that now I can really put some efforts into figuring this all out. Speaker 1 (00:50:21): It's funny when you say that, Lisa, like I'm going from being emotional to being mad as hell because there are easy answers for, for this, which are changing our policies on a state and federal level. Why can't these waivers cross borders? There are so many roadblocks that are systematically in place when you have a disability. I just think about the advocacy that I wish I could do. But then I realized that just last week, our friends in the Down syndrome community, they had an advocacy day on Capitol Hill in DC and one of the things that they're fighting for is to stop organ transplant discrimination. Yeah. Because some states still don't allow someone with Down syndrome to get a life-saving organ transplant because they don't believe their quality of life is worthy enough of having their life saved. And so when I think about something as simple as let's fix our waiver system so our adult children can live as independently as possible, and if someone wants to move to a different state for whatever reason, they can still have the supports in place. We still have to fight for surgeries that save your life. I can't even imagine like, how are we gonna convince Congress to do that? There are only so many hours in the day and I just get so mad that, that the ableism in our, our world is just so blatant, but yet no one cares to change it. It's infuriating. Speaker 2 (00:52:04): You know, Erin , I mean you think about Zoe being born 30 years ago and, and like I said, the life expectancy was 25 and it was because they weren't performing any surgeries and that 30 years later we're still fighting just for them to be recipients of organ transplants. It's, it is remarkable and it shows the little amount of progress that we have made. I, I'm amazed all the time in doing and taking camp places because I do try and, you know, Zoe and I are flying this coming week actually we leave on Wednesday, cam refuses to fly and I'm taking Zoe with me and worried about getting on the plane and how that's gonna work and I'm worried about going to another state and how that's gonna look when I, you know, get off the plane. And there's still, even though I'm not looking at, you know, accessing those physical needs as far as like wheelchairs and things like that, it's even, we went to a play the other day to see cats, you know, where we were sitting. Speaker 2 (00:53:12): It wasn't accessible to her to see the stage because she's so short. But we weren't really eligible for the accessible seating because she wasn't in a wheelchair. And so just like trying to navigate all these like little things that every day that I have to think about with her is just really a struggle. I definitely hear you. I mean, why, why can't I move to another state if I want to? Because I'm so afraid of leaving with the little resources that I have here and why can't my children go wherever and still be able to maybe have their siblings live with them because they have a waiver, but they can't, it just doesn't work that way. I mean it's just like you said, we're so far back that we're still fighting for organ transplant. How do we even get to policy to keep waivers so that they're, you know, um, working across state lines. Speaker 2 (00:54:02): So, and Tennessee is so different from Virginia. I mean it's completely different waiver system. It's not even similar. It's completely different. You do everything differently in Tennessee. This is the other thing about it too, Erin. It's not only that the waiver is different, it took me years to understand the waivers and how they work. Like now I would have to go to another state and not only do I lose the waiver now I've gotta learn an entire system and the mental energy to try and figure all of it out and who I need to know and where I need to go. And because there is no single entry point for anything in any of the states and like all the different places that I would have to try and figure things out. It's just, it's, it's so overwhelming sometimes that, you know, you're like, I'll just stay put. I'm just staying here, just gonna . I might have moved but I'm not gonna move. I'm just gonna sit right here in Virginia and uh, know what I know and I'm happy to know it. Speaker 1 (00:54:55): I can very much relate because I was in Virginia, my son actually did because of pregnancy complications, got the creme de la creme of waivers in Virginia. And the only way I would leave Virginia is to go to a state where I knew there wasn't a waiting list because unfortunately getting a waiver, which is necessary, it's like winning the lottery in some states. Yeah, Speaker 2 (00:55:21): It is here, but I Speaker 1 (00:55:22): It is in Virginia. Um, thankfully it's not here, but I mean I am still not up to understanding everything here. And I've been here five years now. Even the school's jargon is different and I'm still wrapping my head around it. And not only that, but establishing medical care in another state. Yeah. For a kiddo with complex medical needs. And then knowing that when you have down syndrome, if you live long enough, you will get Alzheimer's. That is literally does happen medical proof that that is what we're looking at. So, you know, you need to have established medical care wherever you're going and finding specialists that care. I mean, I went through five ENTs before I found a good one for my son. Took me like two to three years to find an E N T that cared about understanding down syndrome. It's exhausting. Speaker 2 (00:56:21): It is exhausting and is exhausting and I wish it were different thinking about Zoe and Kim and their medical care and then transitioning to adult medical care and all that comes with that because pediatricians don't necessarily even know enough about Down syndrome. And then having to move out of pediatric care into adult care, especially when there's complex needs involved and things that people don't understand and physicians don't understand. And then you're trying to educate the physician on what they need to be looking for. And especially, I live in a rural community, so when just the numbers are small, there's not a lot of people that are interested in educating themselves in all of Southwest Virginia. Neurology's an issue finding a neurologist. There's only a geneticist on the Tennessee line and at Carilion and Roanoke. And so we have no access to that. And really looking at those social determinants of health, had I known better, I would've made sure I'd planted myself in a place that I had access to a lot of things. Speaker 2 (00:57:27): Um, it's worked out because Zoe and Kim right now are medically stable and we can, we can take care of their care, but I I, I have a lot of friends that are in really tough situations in rural areas and they just don't have the means to get out and they're having to cross state lines and insurances aren't paying for this or that and they're on phones for hours fighting for different types of care just to keep their children alive. It's a story that a lot of people don't know about. And then friends that have children with really significant behaviors, there's not enough residential facilities. It's just, it's a lot. It's really a lot. And it's, and it just, and it keeps changing, you know, as you get older like, and they get older, what can you still handle mentally and physically as an adult because you tend to get more tired and sicker too as we age and come up with different things. And yet we're still managing the care for our adult children with disabilities and trying to figure out what's best for them. I talk to, as somebody that supports parents and families and caregivers, some of them are just in really, really tough situations, and it's heartbreaking for them and for their children and for siblings too that sometimes end up taking a really significant level of stress on because the parents no longer able to do it. Speaker 1 (00:58:47): Oh my gosh. Yeah. To the point of communities not being supportive, I live in an area that likes to think of itself as very inclusive and, and very aware of events. And when they talk about diversity, equity, inclusion, there's so much excitement there. But if you say, well, but we need to make sure that disability is included in that equity and inclusion. Speaker 2 (00:59:09): Yeah. Yeah. They're Speaker 1 (00:59:11): Like, oh, but we can't get to that yet. Literally, we'll basically say that, right? It's d e i, but not when it comes to disability. And I hear this conversation time and time again, and it again, it's infuriating, you know, recognizing the intersectionality if you include racism and then ableism. Holy cow. That is awful. Yeah. So we need to do something. This is so serious, and I'm feeling like angst inside me. I wanna, I wanna transition to siblings and maybe talk about some of the joy in what you see. Yeah. Because I, I could use a little joy right now. , um, uh, agreed. Very dark, which is important. But I mean, Lisa, I see with my kids this level of love with the siblings, with their brother. This level of, of not taking any crap just because he has Down syndrome. It's just this really unique, beautiful situation that I just love watching. Speaker 1 (01:00:08): Uh, it's also really hard too though, so I wanna hear about some of the joys that you see and maybe also give a little advice for us that have younger kids, because I know that for me, with that sibling dynamic, I know so often you, we say, oh, I don't give my kid the Down syndrome card. They have to do all the things, but I can't get my oldest to do chores. And so if Arlo won't do chores, then his younger brother and sister are gonna be like, well, Arlo didn't do it. So I'm not doing that today. So I wanna hear about some of the joys, but also maybe some ideas for helping with some of that equity within our own household. Speaker 2 (01:00:46): Yeah. So if we had a five hour podcast, I couldn't talk about all the joys, you know, like there's my gosh, you know, they love Zoe and Cam so much, Zoe and Cam love them so much. It's uh, it's just such a fun dynamic to watch them all get together and do things together. And there is like, kind of what you mentioned with Arlo, like zero excuse. Zoe's not helping, Zoe's not doing this. Cam's bothering me. Like nobody's sitting around in my house like, oh, cam Zo down syndrome, so I won't say this or that to them, you know, it's complete equal treatment for the most part as far as ribbing and having fun and teasing and being annoyed and, you know, seeing them grow up. They would ask me questions and, and this whole recognition of, you know, them being different and what that means, and we've had that conversation many times, but it has transformed into this fierce advocacy on their behalf and on other people's behalf. Speaker 2 (01:01:53): They just grew up with this sort of, um, entrenched sense of social justice because they would see Z cam maybe, you know, cam once got in school suspension for something that was really ridiculous and he had no reason to be forgetting is ss for that. And, and my kids, you know, going to the office and my youngest, we, we have this really unfortunate situation here in my town where the town track is not allowed to have wheels on it. Oh. Which includes wheelchairs. Okay. . So they won't allow it because, so they said no bikes, no strollers, no wheelchairs. Well if that's your, how you access your environment, like how do you go on the track with your family? Mm-hmm. and my daughter has stood up to her superintendent has stood up in meetings, and Zoe or Cam don't use a wheelchair, but it's just so infuriating to her. Speaker 2 (01:02:55): My daughter Berkeley, who's an artist, has started an accessible art camp that she does once a year. She gets a grant for and is able to teach all different types of art to all ability levels of children, typical and otherwise. And, and how she's really built this into something that she wants to continue to pursue. And my other daughter, and she has her master's degree now, and she has turned all her advocacy into like, how do we help people that are unable to help themselves, whatever that looks like, you know, and, um, works in domestic violence shelters and does all kinds of stuff. And so this social justice component that I could have maybe talked to them about it endlessly, they grew up like seeing how there were injustices against their siblings. And they learned to just recognize now instantly, no matter what that social injustice is, you know, whether it is racism or ableism or whatever, they're always like, that's wrong. Speaker 2 (01:04:04): How can we fix it? What do we need to do? How can I change it as a parent, my gosh. Like, I couldn't hope for anything better than them to be these amazing people that are trying to do amazing things in the world and help those that are unable to, for whatever reason, help themselves or are not in a situation to do so. And, and they're just so fun, you know, like they're so adult. Children are so fun and they're so great with Zoe and Cam, and we go to the beach and we just do all these like, fun things. And even when we're just at home, which is a lot of the time, because as you know, it's very hard to travel. And there's been many things we've been unable to do because of Zoe and Cam, for whatever reason, I went to Disney World once, it was, it was the place of torture for me. Speaker 2 (01:04:46): Zoe wouldn't walk, cam wouldn't get on a ride. And I'm like, this is supposed to be the most magical place on earth. It's turned into the worst place for me. And I would, I was thinking like, they're gonna love it. And like, you spent all this money and it was just like, and in the end, we, the three of us, I was left with Cam and Zoe because my typical kids were like running off the different rides and stuff. And the three of us all like silently agreed we would never return because it was just too hard. But it's been really amazing. Like the the sibling thing, the sibling dynamic has been something I never would've anticipated, never realized like what a gift that would've been. And you know, I always thought, well, maybe they're gonna be embarrassed, but my son is picking me up at the airport with Zoe next week and can't wait to show Zoe to all of his friends and out at college and is like planning on taking her to the pool and like all these great things. Speaker 2 (01:05:39): So I think that's gonna be something really fun that you see, Erin, I mean there's, the equity piece is interesting because they'll do the same thing to me. Like, well, if you're not gonna make Zoe do it, then why do I, they'll do that. They'll pull that stone on me as a adult, not the older adults, not the late 20 adults like that. 18, 21 year old adults will try and pull that stuff on me. And I'm like, well, you know what? Why don't you assist though? The two of you can do it together, that piece you're, you're gonna love. It's great. And it's, uh, it's been, yeah, it's too much for me. Hardly even, like, I just can't even believe how wonderful that has turned out. And I would've never guessed it. Speaker 1 (01:06:18): I love that you say that. I, it's interesting I have to share. My 10 year old said something, uh, he is so wise and he said, mom, you know, I wish that they would teach more about disability history in school because we're learning so much about race and things are getting better the more we learn about it. So maybe if we learn more about disabilities, people will be better to people with disabilities. It's like, yeah, thank you. Speaker 2 (01:06:45): Yeah. , I instead out of the mouth of babes, right? It's, uh, it is amazing and he'll just, I mean that, that beautiful spirit will just keep growing and doing amazing things because he's already learned this at 10. Most adults don't know this, Erin. He's learned it at 10 years old. And that'll just continue to just like grow in his sense of justice and, and helping. It's just, you'll just be so proud. I'm just so proud of all seven of my kids for all different kinds of reasons and, and the different paths they've chosen and, and all of them have been heavily influenced by Zoe and Camden and the families we've known and things that they've seen and learned just growing up with, with siblings that are considered different. It's been amazing and it's been really beneficial to Zoe and Kim as well. And, and I know that there are families and they're not siblings and so that's a different dynamic, but sometimes there's cousins or other family members. Speaker 2 (01:07:46): It's definitely been a gift for Zoe and Kim and it's been a, a gift for my other children. I mean, if you were to ask any of my children, even the 18 year old, they would've not chosen our family to be any other way despite all the things we couldn't do. And there were many, I have lots of friends that take really significant family hikes. I would've loved to have been a hiking family or a biking family and Zoe couldn't ride a bike and she wouldn't walk for long periods of time. She can actually walk for longer periods of time, she just won't walk for long. Mm-hmm. . And so those like fun outdoorsy things that I always thought we would do as a family we weren't able to do. I don't know, I just think we have so much joy in other ways that I just really try and focus on those things and, and they've never let me down. Like there's just so much other things that I've been grateful for that I've not really missed that stuff too