Modern day parenting can be so isolating.  It's an unfortunate reality many of us are struggling with.  If you have a child or children with neurodiversity, medically complexities, or disabilities, it can feel downright lonely.  But you are NEVER alone in this journey.   The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities 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.    SHOW NOTES:  Need to talk to someone? The Center for Family Involvement has family navigators ready to listen! They provide 1:1 emotional and informational support as well as community service and systems navigational support. These are volunteers with lived experience who are trained to meet families where they are.  Call or email our help line and someone will be in touch within 48 hours. If you live outside of Virginia, we can connect you with a sister network in your area. Helpline: 877.567.1122 Email: cfihelpline@vcu.edu   David Egan is an advocate, speaker, author, and extraordinary person who you can learn more about here.   John Franklin "Frank" Stephens is a disability advocate, actor, and athlete who penned this brilliant rebuttlle to Ann Coulter following her referring to President Barack Obama as "the retard" in 2012.   TRANSCRIPT: 01:00:07:17 - 01:00:37:00 Speaker 1 Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down  Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.   01:00:37:02 - 01:01:05:13 Speaker 1 This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we've tackled the tough stuff, too. There's been a whole lot of hard in my life lately, so I'm changing it up. Rather than an interview, it's just going to be me. So without further ado, here I go.   01:01:05:15 - 01:01:32:23 Speaker 1 Parenting can be so isolating if you add disability, neurodiversity, medical complexities into the mix, it's often even more so. And it starts from the very beginning. When I was pregnant with my son. I remember so distinctly how excited my husband and I were when the doctor did the ultrasound and said, Everything's good. You have a perfectly healthy baby.   01:01:33:00 - 01:01:58:05 Speaker 1 And now I find the term perfectly healthy to be kind of triggering because what is healthy? My son is perfect. This was in 2010. So this was before we had all the blood tests that come now. The ultrasound didn't show anything of concern, and we went ahead and decided not to do the amniocentesis because there was a risk of miscarriage.   01:01:58:05 - 01:02:26:22 Speaker 1 And we just thought, okay, well, everything looks okay. There's nothing to worry about. We'll continue on. And I had this really lovely pregnancy and we were living in Malaysia at the time. So we traveled. We went to a friend's wedding in India and a babymoon in Bali and all of these wonderful, fun things. I just have the best memories and honestly, I'm really thankful for that because it was just this really great worry.   01:02:26:22 - 01:02:59:03 Speaker 1 Free pregnancy and all of a sudden at 39 weeks, his movement slowed and virtually stopped. It's interesting to me, though, I have this beautiful, beautiful pregnancy. I was reading all the baby books and all of the things and then poof, everything changed. My son stopped moving. We went into the doctor. We were told to have an emergency C-section.   01:02:59:05 - 01:03:27:01 Speaker 1 And because of all the things I read, it made me question all those things. And so I was thinking that I shouldn't have an emergency C-section. What if the doctor's wrong? What if the doctor just wants to have the weekend off? Because I think it was a Friday. It just set me up for so much more hurt than was necessary.   01:03:27:03 - 01:03:53:02 Speaker 1 This doctor was brilliant. She was able to calmly convince me to have this C-section and not to wait. She calmly stressed that waiting would be bad so that doctors saved my son's life. Had we waited, had I not gone in when he stopped moving and had we waited to try to push, Arlo probably would not be here today.   01:03:53:04 - 01:04:17:03 Speaker 1 When he was born, he was my first child, so I didn't realize until I had my other two children that the silence that we experienced after they got him out was actually eerie and scary. I was allowed to give Arlo a kiss on the head and they took him away and he went to the Nikko and I went to the recovery room.   01:04:17:05 - 01:04:42:21 Speaker 1 When I came to and was up in our room, room. The pediatrician came in and told my husband and I that he suspected that Arlo had Down syndrome. And this came as a total shock to us, just absolutely floored and honestly devastated.   01:04:42:23 - 01:05:10:16 Speaker 2 Which is a terrible feeling to have when you just had your first child. Arlo Having Down syndrome is one of the best things that ever happened to me. He has taught me more about life and myself and this world than I could ever imagine. But the fact is he is the first person I met in this entire world with Down syndrome.   01:05:10:18 - 01:05:49:02 Speaker 2 I was 33 at the time. I mean, that alone just felt lonely to have no understanding of what my child's life would be. And then sitting there while he was basically in a bubble with oxygen, reading about Down syndrome and learning about life expectancy and all of these things that our world considers wrong because we are so scared to say the word disability or celebrate the word disability or understand or accept or embrace it.   01:05:49:04 - 01:05:52:21 Speaker 2 And it's really frustrating to me in retrospect because.   01:05:52:23 - 01:06:39:03 Speaker 1 One in four Americans have a disability that impact their everyday life. Down syndrome is fairly common. We know more about it than a lot of other conditions, but yet we know so little about it. I know now because I've been in this for 14 years and I've been able to really think about things. Part of the reason it felt so devastating and so shocking is because we still segregate our world between people who are disabled and not disabled, especially when it comes to intellectual and developmental disabilities.   01:06:39:03 - 01:06:55:24 Speaker 1 Because anyone who speaks in an untraditional way and communicate differently and looks or behaves in a way that doesn't conform to what we think are societal norms is looked at differently.   01:06:56:01 - 01:07:24:16 Speaker 1 My son has Down syndrome. It's common, but he still gets stared at in stores and it stinks. I think about how this world is and how people look at my son and friends of his and friends of mine who have other disability sees and how my peers, adults my age, older and younger as well. They're in similar positions that I was in when Arlo was born.   01:07:24:18 - 01:07:56:19 Speaker 1 They've probably not had an actual meaningful interaction with anyone who's disabled. I'm certainly not anyone with an intellectual or developmental disability, and I think that's a challenge that we as parents of kids who have disabilities don't talk about enough. Not only are we learning to navigate the world with our child and for our child because we are our child's voice for the foreseeable future.   01:07:56:21 - 01:08:06:12 Speaker 1 And as much as I help my son advocate for himself, even at the age of 13, he doesn't communicate in a traditional way. He doesn't.   01:08:06:15 - 01:08:08:02 Speaker 2 Really.   01:08:08:04 - 01:08:44:16 Speaker 1 Care about a lot of the things that I'm fighting for for him. I don't know if he understands them or not. I am trying to help him find his voice. Until then, I am his voice and there is a lot of learning that we have to do as parents to be able to do that. Disability is such a separate condition that if you're someone who has never been a part of the disability community and you have a child with a disability, you have a tremendous learning curve.   01:08:44:18 - 01:09:02:18 Speaker 1 In addition to being that person's parent and learning how to be a parent. You also have to learn about the medical components that go into caring for your child, the community based living components that go with taking care of your child, which.   01:09:02:20 - 01:09:04:11 Speaker 2 My gosh.   01:09:04:13 - 01:09:58:13 Speaker 1 Are so hard to figure out. And they vary from state to state. There's early intervention, which is fabulous, but it varies from state to state, and you've got to figure that out. And then the schools. I still remember being at the farmer's market with Arlo when he was a wee one and a mother of an adult child with a disability, just coming to me and almost tearfully telling me how hard it was helping her child navigate the schools and said to me how she still feels the bruises from that time in her life because the schools just don't understand or don't have the funds or don't have the want to support students with disabilities.   01:09:58:15 - 01:10:53:24 Speaker 1 It's hard. So we have to learn all this new jargon and learn all of this medical staff and understand the finances of supporting someone for their entire life. And my gosh, the mounds of paperwork that you have to do. I have three kids. The paperwork for Arlo, because of his disability is three times as much as my other two children and then while we're doing all of this work to help our child and advocate for our child and help our child learn to advocate for themselves, we're also having to overcome and understand our own herbalism these things that are ingrained in us that we don't even realize are there because it's this societal weight.   01:10:54:01 - 01:11:16:23 Speaker 1 There's a societal weight that is put on the shoulders of people with disabilities, and it's ridiculous. And we don't call it out enough. And as parents, I'm not even sure we understand how significant this is until our children get older or unless we speak to adults with disabilities.   01:11:17:00 - 01:11:17:20 Speaker 2 Who.   01:11:17:22 - 01:11:51:00 Speaker 1 Can truly speak about their own experiences. If we really stop and think about it, our systems are set up to fix disability, not to accept it. Our mindset as a society, I mean not just in the United States but around the world, is that disability is something that we should overcome instead of accept and live with. We constantly see in the media how overcoming disability is celebrated.   01:11:51:02 - 01:12:18:16 Speaker 1 Oftentimes it's a physical disability that you see someone who maybe is an amputee and then they get prosthetics and they start running and they win races and they're back again. And that's great. But you know what? There are a lot of disabilities that are just here, and it's part of our existence. There are people who use wheelchairs who they don't care that they use a wheelchair.   01:12:18:18 - 01:12:38:22 Speaker 1 It's part of their life. They wouldn't change it. It's just who they are. And the thing that they would rather have change is the accessibility so they can go wherever they want, when they need to. And this mindset, I mean, it starts from the beginning. And as parents, it takes a while to come out of it. And some parents, I'm not sure ever do.   01:12:38:22 - 01:13:08:18 Speaker 1 But even in early intervention, a lot of what is taught is trying to fix a child or get the child to conform to societal norms. I remember how important it was to me that Arlo could communicate clearly, and I remember seeing these amazing people with Down syndrome early on. A friend of mine, David Egan, amazing speaker, right? He wrote a book.   01:13:08:20 - 01:13:39:04 Speaker 1 Brilliant guy. Frank Stevens, also a man with Down syndrome who is brilliant and my gosh, I'll put in the show notes his rebuttal to Ann Colter about the R word just absolutely perfect. And as a parent, you have these hopes and dreams and wishes for your child based on your experience. And so when your child's born, you still have those.   01:13:39:06 - 01:14:07:02 Speaker 1 And early intervention comes in and you look and you see potential and you want your child to reach their full potential. But not all of our kids are going to be Frank Stevens or David Egan or whomever, and not all of them want to be. And I spent so much time and energy and money in addition to early intervention, we did extra speech therapy and it was great.   01:14:07:02 - 01:14:46:10 Speaker 1 And the speech therapist, my gosh, I still love this woman and I need to reach out to her and tell her this because I miss her. But Arlo's 13 now, and you know what? I don't think he'll ever speak clearly. But there's only so much those therapies and interventions can do. There's so much emphasis put on that full potential component that as parents, I feel like it takes a while and you're so busy doing that and you're just thrown into this cycle of helping, helping, helping, fixing, fixing, fixing.   01:14:46:12 - 01:15:10:17 Speaker 1 And you're so busy being a parent and an advocate and a caregiver that you can't see the forest for the trees. And if I could turn back time, I would just do early intervention and I'd cut all the other stuff out and I'd take him to the playground and I let his brother have his naps and not have those be interrupted.   01:15:10:19 - 01:15:39:17 Speaker 1 And I would save all the money we spent on co-pays and take them on a vacation. But I can't do that, and I know that now, so I don't kick myself, but I feel like I should share it so other parents don't feel that need to do, do, do all the time. It's okay to stop and just enjoy your child.   01:15:39:19 - 01:16:18:19 Speaker 1 But no one's there to tell us that because we're trying to do the best for them in our mindset in this country about achievement and progress and growth. And for potential is so great that we're pushing, pushing, pushing. And you have to wonder what for, because life is short and there are some curveballs that come our way and we need to stop and experience some joy to.   01:16:18:21 - 01:16:54:20 Speaker 1 So if there's something we can cut out, we should. And if we as parents are so stressed and so lonely, then we should find our own network of support because a happy parent equals a happy child. I find myself since Arlo was born, always gravitating toward other parents who have children with disabilities because they just get it. We naturally understand how difficult it is.   01:16:54:22 - 01:17:02:16 Speaker 1 I can look at some of my friends and I see their face and I see their eyes and I see how tired they are.   01:17:02:18 - 01:17:21:16 Speaker 2 And I understand it because with significant disabilities, literally every day you're going up against something. It could be something as seemingly innocuous as there are no accessible spaces.   01:17:21:18 - 01:17:30:09 Speaker 1 So how am I going to get my child with a wheelchair to such and such place? Or there's bikes in the sidewalk.   01:17:30:11 - 01:17:54:19 Speaker 2 Or there's a school dance and my child doesn't even want to go because he doesn't feel a part of the school. It causes more anxiety to try to go to fun social things that you're supposed to really look forward to because people don't understand or accept or celebrate disability.   01:17:54:20 - 01:18:33:14 Speaker 1 I remember early on when Arlo was 81, family elders had all sorts of advice and one of them said something that if I could turn back time I have so many rebuttals for. But back then I just was so shellshocked. I just kind of took everything in and thought they actually maybe knew what they were talking about. They told me how hard parenting is and how there's always disappointment and expectations that are sort of shattered.   01:18:33:16 - 01:18:44:05 Speaker 1 And I just got that up front all at once at the beginning instead of throughout. And what a.   01:18:44:05 - 01:18:47:01 Speaker 2 Load of.   01:18:47:03 - 01:18:56:11 Speaker 1 So many expletives. Okay. Like that is the most ridiculous thing I've ever heard because.   01:18:56:13 - 01:18:58:14 Speaker 2 One.   01:18:58:16 - 01:19:45:00 Speaker 1 There's no disappointment. I like the disappointment I feel has everything to do with the world that is inaccessible and nothing to do with my son, who is absolutely amazing. And I still have wishes and hopes and dreams for him. They're different, but they're there. Yeah, there are letdowns, and it's not for my son's lack of trying. It's often because of the obstacles set up from an in accessible world, from a world that doesn't accept people with disabilities.   01:19:45:02 - 01:20:18:06 Speaker 1 And as parents, we see this every day. And I think sometimes I see my peers with disabilities handle this so much better because they're just used to it. Whereas I get angry and upset because that's my child. It's just it's interesting. And those are conversations I feel like we need to have. But you know that mama bear feeling you have when you have a child who is just marginalized because of their chromosome.   01:20:18:06 - 01:20:19:08 Speaker 2 Ends or.   01:20:19:08 - 01:20:57:13 Speaker 1 Marginalized because of something that happened during birth or marginalized because of being neurodiverse or whatever. It's hard and it's relentless and it's exhausting. And the supports that we have are so hard to access between lack of funding and lack of staff and shortages and all of the things. So when I say you're not alone and I'm just talking into a microphone here, I.   01:20:57:13 - 01:20:58:14 Speaker 2 Just hope.   01:20:58:14 - 01:21:11:23 Speaker 1 That other parents, other caregivers out there hear this and know that we're here doing this together, doing this hard work, but we're not.   01:21:11:23 - 01:21:14:01 Speaker 2 Alone.   01:21:14:03 - 01:21:19:06 Speaker 1 We're all in our little bubbles, I guess.   01:21:19:08 - 01:21:23:08 Speaker 2 But we're not alone.   01:21:23:10 - 01:21:52:17 Speaker 1 Whenever I drive in my car to and from my son's appointments, because we have to go so far to see so many of these specialists. And it's always been a lot. Because even if you're not far from a specialist and you live in a bigger city, you're dealing with rush hour traffic. I mean, it's a lot of time taken to go to see doctors and therapists and whomever.   01:21:52:19 - 01:21:58:23 Speaker 1 And when I'm driving to and from these places, I think how many other parents are doing.   01:21:58:23 - 01:22:00:01 Speaker 2 This.   01:22:00:03 - 01:22:10:15 Speaker 1 With their children and probably just so tired and so tapped out.   01:22:10:17 - 01:22:51:04 Speaker 2 And feeling so alone. And I'm crying because that loneliness is more than just being in the car alone. I mean, you have your child there, so it's not really alone. I love my son. It's like I love hanging out with him. I wish that we weren't driving to a doctor. I wish that we were driving somewhere fun or all that time and money and energy was spent on a fun vacation or going to the movies.   01:22:51:06 - 01:23:09:09 Speaker 2 But that's the thing. We're not alone. We're not the only parents out there giving all we got just to, like, keep that ball moving right? And there are other parents who can't find a night nurse. It's unfortunate, but we're not alone. We're in this together.   01:23:09:11 - 01:23:13:06 Speaker 1 And I hope that through talking about this.   01:23:13:06 - 01:23:24:00 Speaker 2 On a podcast and if I'm ever not driving all the time writing about it, that we can connect people. I mean, that's part of what my work is, is connecting.   01:23:24:00 - 01:23:52:00 Speaker 1 Families so they don't feel alone. This isolation and this loneliness, we feel it's so complex and there's so many nuance as to it. There are things that are hard to even talk about, like the fact that a lot of us face potentially outliving our child and that weird thing where.   01:23:52:02 - 01:23:55:10 Speaker 2 You don't want this child to be.   01:23:55:10 - 01:23:56:20 Speaker 1 Alone in the world without.   01:23:56:20 - 01:23:57:24 Speaker 2 You because.   01:23:57:24 - 01:24:03:04 Speaker 1 You know how brutal it is when you have a disability.   01:24:03:06 - 01:24:06:08 Speaker 2 And so you're willing to sacrifice.   01:24:06:10 - 01:24:07:11 Speaker 1 Enduring.   01:24:07:11 - 01:24:17:14 Speaker 2 The pain of having to say goodbye to your child. So they're never alone. And if we have other children.   01:24:17:16 - 01:24:19:00 Speaker 1 We're making sure that we.   01:24:19:00 - 01:24:23:03 Speaker 2 Set them up so.   01:24:23:05 - 01:24:34:02 Speaker 1 They are not the person who's responsible for their sibling if something happens to you. But at the same time.   01:24:34:04 - 01:24:34:19 Speaker 2 You hope.   01:24:34:19 - 01:24:43:10 Speaker 1 That they'll want to be there, but then you hope that they don't have to be there. It's these weird mixes of emotion.   01:24:43:10 - 01:24:44:06 Speaker 2 That.   01:24:44:08 - 01:24:57:06 Speaker 1 You can't explain. And so when I see my friends who are in similar situations, I swear there's just this look in our eyes.   01:24:57:08 - 01:25:05:13 Speaker 2 I can see into their soul and understand.   01:25:05:15 - 01:25:24:15 Speaker 1 When I see other parents who have kids with disabilities, I just feel connected to them because there is this heaviness that we carry that you cannot understand unless you're in it as well. It's this extreme.   01:25:24:15 - 01:25:28:17 Speaker 2 Joy and pride that we have.   01:25:28:19 - 01:25:41:11 Speaker 1 For our children, but it's also this burden not of our children.   01:25:41:13 - 01:25:41:22 Speaker 2 But of.   01:25:42:01 - 01:25:47:11 Speaker 1 All the other stuff that is just not.   01:25:47:13 - 01:25:48:09 Speaker 2 Inclusive.   01:25:48:09 - 01:25:48:15 Speaker 1 Or.   01:25:48:15 - 01:25:50:14 Speaker 2 Equitable.   01:25:50:16 - 01:25:58:00 Speaker 1 Or any of the things it needs to be or that it intends to be.   01:25:58:02 - 01:26:59:14 Speaker 1 There are all these systems set up to support our kids, but the implementation of them isn't there yet, not in community based living, not in our schools. And when you try to just do something like everybody else, sometimes it feels impossible and it shouldn't. And these hurdles exist practically everywhere we turn. And so not only are we tired and exhausted from the day to day caregiving aspect of this, which is completely different from parenting, but we're exhausted from just the lack of accessibility, even when things are quote unquote accessible.   01:26:59:16 - 01:27:17:07 Speaker 1 Because unless there's a change in our thinking as a society or our behaviors or our mindsets, it it's going to remain inaccessible. I mean, I know parents.   01:27:17:07 - 01:27:19:14 Speaker 2 That have not had a proper night's.   01:27:19:14 - 01:27:25:18 Speaker 1 Sleep in years.   01:27:25:20 - 01:28:01:24 Speaker 1 This is some heavy stuff that I'm laying out here, and I get that. But I'm doing this for a reason. It's not that there is not joy. I love my son. I love my children. I love my life. But sometimes sugarcoating it does a disservice to what is really happening. And I cannot say enough that it is never about him.   01:28:02:01 - 01:28:20:23 Speaker 1 My sadness, my frustration and my anger. It's never about my son. It's never about anything but what we're up against because.   01:28:20:23 - 01:28:21:12 Speaker 2 People.   01:28:21:12 - 01:28:58:24 Speaker 1 Don't understand. And that's why I want to be real right now, especially in this age of social media and smiling pictures and reels that are all laughing and funny and hilarious. There is a heaviness there in a lot of our lives, and I want people to know that they're not alone in that heaviness that despite the pictures they see, I would bet that so many other people are feeling it, too.   01:28:59:01 - 01:29:40:12 Speaker 1 And I hope that we can start talking about it more and being open about it. There's always this effort to switch and make things positive and share the good as well, and that's really important. And that's why I cannot stress enough how amazing and beautiful parenting is. But as caregivers for people who truly do have to do caregiving in addition to parenting or grandparenting or whatever aspect of this you're in, caregiving is hard.   01:29:40:14 - 01:30:01:21 Speaker 1 We're taught to sandwich things with sort of good, tough stuff. Good and I don't want to do that today. I don't want to twist this and make some funny story or tell anyone it's all going to be okay because you know what?   01:30:01:23 - 01:30:18:12 Speaker 2 Sometimes it's not okay. Sometimes things don't work out. But that's why hope and perseverance are so important, because that combination can.   01:30:18:12 - 01:30:38:08 Speaker 1 Get us through the day, the week, the years. And I hope that by being open about how hard things are and letting people know that despite how things might seem on the exterior, a lot of us are.   01:30:38:08 - 01:30:40:11 Speaker 2 Struggling and that.   01:30:40:11 - 01:31:32:08 Speaker 1 This journey is hard and that even people who seem to understand it and know it and navigate it well, that doesn't mean that they have all the answers or that they're okay just means they're getting through the day. So if that's where you're at right now, know that there are other people struggling right along with you. And for all of us, just kindness, patience, understanding, offering a smile or help instead of passing judgment can make these hard days a little easier.   01:31:32:10 - 01:31:53:21 Speaker 1 Thanks for listening. Please rate review, share and subscribe and let me know what you want to learn more about. There's no shortage of issues to cover, but I'll gladly move a hot topic to the top of the list. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.