1 00:00:00,000 --> 00:00:06,000 Hello, my name is Leslie Kane and I am the host of the Why Not Today podcast. 2 00:00:06,000 --> 00:00:10,000 This is a podcast to celebrate people who have been courageous and said, 3 00:00:10,000 --> 00:00:14,000 Why Not Today? I started this podcast in honor of my father, 4 00:00:14,000 --> 00:00:18,000 Patrick Kane, who often said, Why Not Today? I am based in Reston, 5 00:00:18,000 --> 00:00:23,000 Virginia, a planned community right outside of Washington, D.C. and thanks for joining us today. 6 00:00:23,000 --> 00:00:26,000 And I always say I'm excited about my guests, which I always am. 7 00:00:26,000 --> 00:00:31,000 And it's so much fun to get to know people. And my guest today, Elizabeth Newton, 8 00:00:31,000 --> 00:00:36,000 I haven't met you in person, but we did have a conversation. 9 00:00:36,000 --> 00:00:40,000 And I would like to talk about connections and how you met people. 10 00:00:40,000 --> 00:00:46,000 So if anybody knows much about me, my younger sister, Amanda, has Down syndrome. 11 00:00:46,000 --> 00:00:51,000 And it's interesting, my niece married somebody whose uncle has Down syndrome. 12 00:00:51,000 --> 00:00:57,000 So we're kind of swimming that world a long time. And my niece discovered Elizabeth, 13 00:00:57,000 --> 00:01:04,000 because she has an Instagram account and a blog. It's called Catfish with Ketchup, 14 00:01:04,000 --> 00:01:09,000 which I have no idea what that means. But I started following it because Elizabeth 15 00:01:09,000 --> 00:01:13,000 has an interest in Journey and I want to have her share. And we just had a call 16 00:01:13,000 --> 00:01:16,000 and we just laughed and talked and shared stories. And I'm like, 17 00:01:16,000 --> 00:01:21,000 you have got to be on my podcast. And so before we came on, Elizabeth and I were 18 00:01:21,000 --> 00:01:27,000 talking about all the best variety of guests I've had and talking about all different subjects. 19 00:01:27,000 --> 00:01:32,000 And so this little subject we really haven't talked about with special needs. 20 00:01:32,000 --> 00:01:37,000 And so Elizabeth, I'm going to let you introduce yourself, tell us a little about you 21 00:01:37,000 --> 00:01:44,000 and a fun fact about you. And then we will talk about our subject of really, 22 00:01:44,000 --> 00:01:53,000 we're going to talk about the courage it is Eric takes to live with raise health support. 23 00:01:53,000 --> 00:01:59,000 Somebody with Down syndrome is all the similarities. So Elizabeth, I'm super excited to just chat. 24 00:01:59,000 --> 00:02:04,000 And we're going to try to keep this to our normal 30 minutes, but we talk the other day, we talk forever. 25 00:02:04,000 --> 00:02:08,000 So Elizabeth Newton, I'm excited to have you. 26 00:02:08,000 --> 00:02:12,000 Thank you for having me, Leslie. It's really a pleasure to be here. 27 00:02:12,000 --> 00:02:17,000 I think you, you let off with a good place to start. I'll introduce myself. 28 00:02:17,000 --> 00:02:24,000 I am a mother of three. And I also have a sister who I am her legal guardian now. 29 00:02:24,000 --> 00:02:33,000 And my sister has Down syndrome as does yours. And she inspired the adoption of my oldest daughter whose name is Josie. 30 00:02:33,000 --> 00:02:43,000 And why the Instagram account is called catfish with ketchup is because my sister's obsessed with food and she gives everyone in her life a food name. 31 00:02:43,000 --> 00:02:55,000 And she named Josie catfish with ketchup as soon as we adopted her and brought her home, she decided she would be called and we begged her for a cuter, more feminine nickname, but she just refused. 32 00:02:55,000 --> 00:03:03,000 We are Catholics. I don't know if it's Friday during Lent, the fish fries or whatever, but that was on Leanne's mind. And that's what that baby would be called. 33 00:03:03,000 --> 00:03:15,000 So it just kind of stuck Leanne still calls her that. So Josie is now 13. And I also have two younger daughters, Marin is almost 12 and Lydia is nine. 34 00:03:15,000 --> 00:03:17,000 You're a busy woman. 35 00:03:17,000 --> 00:03:18,000 Yes. 36 00:03:18,000 --> 00:03:22,000 Yeah. So what's an interesting fact about you? 37 00:03:22,000 --> 00:03:30,000 Well, in addition to being fully submersed in the Down syndrome world that tends to be probably the part about me that sticks out. 38 00:03:30,000 --> 00:03:35,000 I have once talked to Kenny Rogers on the phone. How's that for interesting. 39 00:03:35,000 --> 00:03:38,000 That's pretty cool. How did that happen? 40 00:03:38,000 --> 00:03:59,000 I went to Belmont University in Nashville, Tennessee, and I interned for a record label there and he called one day that was his label and he called so I just happened to answer but that was actually a really fun experience going to Belmont I had several internships where I got to meet celebrities and so that was, that was a really fun part of my youth. 41 00:03:59,000 --> 00:04:03,000 Yeah, that's really cool. That is a fun fact, nobody would really know. 42 00:04:03,000 --> 00:04:08,000 So, Elizabeth, what does courage mean to you? 43 00:04:08,000 --> 00:04:16,000 You know, courage is having the conviction to pursue your values, despite your fears. 44 00:04:16,000 --> 00:04:26,000 So, we all have situations that intimidate us situations that make us uncomfortable maybe things that are unfamiliar that we haven't experienced. 45 00:04:26,000 --> 00:04:34,000 But there are things that we're willing to walk through to achieve our goals and do know is right. 46 00:04:34,000 --> 00:04:41,000 That's awesome. I love that definition. And I love aligning you with values, which what we know is right. 47 00:04:41,000 --> 00:04:50,000 So you have a courageous life with raising not just one but two ladies. 48 00:04:50,000 --> 00:04:58,000 I know and it's interesting in us having our conversation how our lives are very similar yet different and just synergies and differences. 49 00:04:58,000 --> 00:05:05,000 So, you, your older sister is Leanne. How much older is she than you? 50 00:05:05,000 --> 00:05:07,000 She's three and a half years older than I am. 51 00:05:07,000 --> 00:05:13,000 Okay. And then my sister that has Down Center is 18 years younger than me. 52 00:05:13,000 --> 00:05:14,000 Wow. 53 00:05:14,000 --> 00:05:22,000 So, it's definitely different. And then it's just the two of you as siblings and I have four siblings in between Amanda and I. 54 00:05:22,000 --> 00:05:27,000 So, definitely a lot of similarities and lots of differences. 55 00:05:27,000 --> 00:05:35,000 So, your mom, both your parents passed away. So how long ago did you get guardianship of Leanne? 56 00:05:35,000 --> 00:05:46,000 It was 2018. My father died in 2012, but it was 2018 and in my mom got sick and kind of declined rather suddenly. 57 00:05:46,000 --> 00:05:58,000 It was always the plan that someday I would be responsible for Leanne. It's just the two of us. So really, there are no other options as far as family connections. 58 00:05:58,000 --> 00:06:05,000 But we certainly didn't anticipate that it would happen that quickly. Youngest daughter was only four when my mom passed away. 59 00:06:05,000 --> 00:06:15,000 So, it all kind of fell in our laps and obviously there was a lot of upheaval and adjustment, but we made it work. 60 00:06:15,000 --> 00:06:23,000 Unfortunately, we didn't live in the same area. So we did have to kind of uproot Leanne from her community. She had just lost her mother. 61 00:06:23,000 --> 00:06:31,000 And she lost all her friends, her day program, everything she'd known for 40 years. 62 00:06:31,000 --> 00:06:40,000 So, when we relocated her here to live with us, I was determined to get her established and feeling a sense of community. 63 00:06:40,000 --> 00:06:46,000 Because, as I'm sure you've experienced with Amanda, because we've talked about it, Leanne kind of has this presence. 64 00:06:46,000 --> 00:06:54,000 Where we grew up, she was a bit of a local celebrity and my mom and I joke that we didn't have names. We didn't need them because she was Leanne's mom. 65 00:06:54,000 --> 00:06:59,000 And I was Leanne's sister and everywhere you went, Leanne would run into somebody she knew. 66 00:06:59,000 --> 00:07:07,000 And so I was really eager to have Leanne feel that sense of community once she came here. 67 00:07:07,000 --> 00:07:20,000 And that's awesome. And yeah, totally can relate. Everybody knows Amanda and everybody loves Amanda. And it's kind of funny how it's that man that can go in a store with no money, come out with what she wanted and change. 68 00:07:20,000 --> 00:07:30,000 How do you do that, kids? Everybody knows her. So, yes. And then when did you adopt Josie? 69 00:07:30,000 --> 00:07:47,000 Well, that I backed that story up a little bit further. Josie was born in 2010. So my husband and I have moved around a lot with his career and we were married for about eight years when we got settled into a place where we decided at the time to start a family. 70 00:07:47,000 --> 00:08:04,000 And this is the part that kind of surprises people is that I, everywhere we had moved, I had missed being a part of the special needs community. I always missed my sister. So I always look for opportunities to volunteer and to be involved in the special needs community. 71 00:08:04,000 --> 00:08:21,000 So when we decided to start a family, it felt very natural to me to adopt a baby with Down syndrome. And, you know, Travis, I don't recall the exact conversation, the way it went, but he was completely on board. 72 00:08:21,000 --> 00:08:32,000 And so we contacted the National Down syndrome adoption network. And we got on the list. There was actually over 200 families at the time waiting to adopt the baby with Down syndrome. 73 00:08:32,000 --> 00:08:39,000 It was remarkable, but it was just literally a matter of months by the time we did our home study and got it. 74 00:08:39,000 --> 00:08:43,000 Wow. And was Josie newborn when you got her? 75 00:08:43,000 --> 00:08:59,000 Yes, Josie was in the NICU for quite some time. So it took us about eight to 10 weeks to actually bring her home. But she was a newborn. And one of the things that we maybe had been a little naive about, we knew there would potentially be some health challenges. 76 00:08:59,000 --> 00:09:14,000 We knew that she would require a heart surgery, which she had in July of 2010. But she had quite a few substantial health challenges that whole first year was 10 of those months she was hospitalized. 77 00:09:14,000 --> 00:09:26,000 She had chronic lung disease. So a lot of respiratory distress episodes. So it was, we had some really serious incidents with her. And then she got placed with a G tube. 78 00:09:26,000 --> 00:09:42,000 So she was fed with a feeding tube. So that was a whole set of challenges that we had to overcome. And it was really, I mean, it was really intense parenting and becoming honorary medical professionals in the process. 79 00:09:42,000 --> 00:09:49,000 Yeah, absolutely. So and yeah, the dynamics are different like when Amanda was born to number six. 80 00:09:49,000 --> 00:10:07,000 So my mom was totally knew what she was doing parenting. So, you know, that was an added blessing of navigating all the different things with Amanda. But your mom too, Leanne being the first as the first child, I'm sure that was harder. 81 00:10:07,000 --> 00:10:15,000 You know, you're just figuring out how to be a mom. My niece just had a baby. And after she got the baby home, she goes, What is wrong with these people? The hospital that gave me this baby to bring home? 82 00:10:15,000 --> 00:10:25,000 I don't even know what to do with it. Luckily, her mom and her sister and dad were there to help. But like, you know, and as the dynamics of a child with Down syndrome. 83 00:10:25,000 --> 00:10:37,000 Yeah, I think that there's a certain I have a say that ultimately benefits you because it's one of those things that if I think back and and I, it really intimidates me now. 84 00:10:37,000 --> 00:10:48,000 You know, you just kind of rise to the occasion and do what you have to do. And it's scary, but it has so much meaning and purpose. This is your child and you love them and you're going to do whatever it takes to 85 00:10:48,000 --> 00:11:07,000 them through these challenges. So another testimony to courage and I feel like motherhood really elicits that in so many ways. And oftentimes it's ways that we don't expect or plan for but we step up because that's what we do for our kids. Yeah, you do it, you know, really think it's courageous. 86 00:11:07,000 --> 00:11:23,000 The things we have to do, you know, Amanda had those health issues as well. She had open heart surgery. She was to go when they did that. But when she was born and probably similar when Leanne was born, they asked my parents if they wanted to keep her. 87 00:11:23,000 --> 00:11:29,000 They wanted to put her in institution, which in those days that happened more often. 88 00:11:29,000 --> 00:11:45,000 The children, I mean, my mom and dad are like, What do you mean, keeper? Of course, we're going to keep her, you know, yes, but I guess that happened. And still today, you know, the fact that, you know, Josie was up for adoption. 89 00:11:45,000 --> 00:12:03,000 I think one of the things that people I think find interesting about the fact that I document our journey, initially on the blog and now much more frequently on social media is just to see those generational differences like you said because my parents were given the option 90 00:12:03,000 --> 00:12:15,000 not to operate on Leanne, she required a life-saving operation at birth and I mean they were given the option just forget about her, let her die and go on and have other kids as this had never happened. 91 00:12:15,000 --> 00:12:28,000 And they chose, you know, to do what it took to, you know, bring their baby home and love her. And so it's remarkable just the generational differences and attitudes. 92 00:12:28,000 --> 00:12:41,000 And also one thing that my mom always marveled at was how much more access Josie had to therapies, medical interventions, educational opportunities, just everything has come so far. 93 00:12:41,000 --> 00:12:57,000 So to see two generations, I always tell when mothers of little ones with special needs reach out to me, I always tell them you cannot look at an adult with Down syndrome and project that's what your child will be like because it's just the resources and opportunities 94 00:12:57,000 --> 00:13:07,000 available to our kids these days are so much more expansive than what they were, you know, Amanda was born in 19th century when her sister was born. 95 00:13:07,000 --> 00:13:23,000 Yeah, and like with, you know, now too, first of all, there's much more knowledge out there, much more advocacy, like the fact that my niece got involved right away, you know, because that's what she grew up with. 96 00:13:23,000 --> 00:13:40,000 Amanda is, I think, 10 years older than her, maybe a little, maybe 12. But I remember the day that Grace, my niece, like, why am I getting smarter than my aunt, you know, but yeah, there's so many more resources and things available. 97 00:13:40,000 --> 00:13:55,000 But also, I think, with how far we've come with technology, social media, that there's resources you can reach out to when Amanda was born, there wasn't social media, there wasn't Internet, there was no such thing as Google. 98 00:13:55,000 --> 00:14:00,000 So I think people have so much more access, good and bad, to what's out there. 99 00:14:00,000 --> 00:14:16,000 You know what, I think about this all the time, I have a speaking engagement this weekend and this keeps crossing my mind because it, a lot of parents describe this feeling of isolation when you're given this diagnosis and you don't know anything about it and you 100 00:14:16,000 --> 00:14:31,000 don't know if you have, maybe have a lot of negative images in your head of what life will be like for this child. And you're right, in our parents generation, they didn't have any, anything to counter those images, they didn't know anything, I mean, they were just going entirely blind, 101 00:14:31,000 --> 00:14:47,000 whereas now, social media really does create a community and you can, in addition to receiving the clinical information from the medical professionals, which may or may not be presented favorably, you can get out there and find accounts like ours and see, you know, 102 00:14:47,000 --> 00:14:59,000 quote unquote normal, I hate that word, but see regular people just living their lives, family members with Down syndrome, it's like, you know, we're still going and you know what, we love each other. 103 00:14:59,000 --> 00:15:12,000 And we have a great time and our lives are so rich and purposeful and it's not easy. But I always tell people if you're looking for easy then parenting in general is not for you because 104 00:15:12,000 --> 00:15:22,000 regardless of how many chromosomes your kids have, it's not easy. So, so, but you know what, it's entirely worth it. It really is. 105 00:15:22,000 --> 00:15:36,000 Absolutely. Well, you know, talk about loneliness when Amanda was born, the doctors in the hospital asked my mom, or my parents if they wanted, my mom would be more comfortable in an area in the hospital away from the quote unquote normal mothers. 106 00:15:36,000 --> 00:16:01,000 That's awful. Like, oh, goodness. Yeah. Yeah. But now, yes, so much knowledge. I had a boss years ago that I've known her. She's known my parents, Amanda was probably even born, but her son and daughter in law, a couple years ago, were pregnant with a child Lucas that had Down syndrome. 107 00:16:01,000 --> 00:16:13,000 And before they for months, they knew, which my mother did not know until the day Amanda was born. But for months, they knew when they prepared and they connected and they're part of a huge support. 108 00:16:13,000 --> 00:16:27,000 A few years ago, we met him for lunch and it was just kind of fun to see Amanda grass and connect with him. But just all the research, like they have a whole playgroup of parents with kids with Down syndrome. 109 00:16:27,000 --> 00:16:42,000 And they all play together and, you know, support each other and have the support group for the parents. And yeah, so many resources and the Down syndrome Association. I'm on a couple of social media. 110 00:16:42,000 --> 00:17:00,000 I know, like the Down syndrome Association, my friend, baby was born. He was part of the campaign and they had a picture up in the Times Square in New York City, which is kind of fun. And, you know, just the education and what is out there is so much better. 111 00:17:00,000 --> 00:17:18,000 Kids with special needs are special. And that's why the word special is there and Amanda, Leanne, Josie, I mean, all your kids, but a different level of fun and stories. And I know we shared stories and I love reading your blog and information about you guys just navigating life. 112 00:17:18,000 --> 00:17:28,000 I think the most recent one is you were at a book club or doing something and your husband was baiting everybody. And it seems like a big fiasco. 113 00:17:28,000 --> 00:17:46,000 Yeah, yeah, you want to hear a story. Yeah, and God bless him Travis he's just surrounded by females but I was hosting book club and I had a bunch of my neighbors in my in my garage and Travis was in the house and unbeknownst to me all heck was breaking loose. 114 00:17:46,000 --> 00:18:06,000 Everybody was trying to shower at the same time and that's not typically Travis's domain that's typically something I do. So he was trying to help Josie and this is a couple years back and because everybody was showing at the same time there was no hot water so Leanne decided somehow the solution was in the shower head so she tried to 115 00:18:06,000 --> 00:18:19,000 scale her shower curtain, literally climate and as you can imagine the whole thing came down and she fell and flooded the bathroom and my poor husband is like trying to run and see what's going on Josie wet. 116 00:18:19,000 --> 00:18:25,000 It was just a wreck and in all the while I didn't even know bless his heart he did. 117 00:18:25,000 --> 00:18:41,000 But I mean this is kind of a lot of our humorous stories don't feel humorous in the moment, especially when it comes to Leanne's problem solving skills because she just has this way of making the problem substantially worse. 118 00:18:41,000 --> 00:18:53,000 So she's trying to be independent God bless her but so yeah that was that was one of the stories and it's always funnier at least for me when it happens to somebody else I always thought it was hilarious the things should do and say to embarrass my mom. 119 00:18:53,000 --> 00:19:08,000 And now that it's me I'm like, I mean it was because she was so much younger she was our boy basically I mean my brother is in France taught her totally inappropriate things to say and do in the grocery store. 120 00:19:08,000 --> 00:19:14,000 And I'm all of you the grocery store is her and she do something and she's like, Oh my goodness, like what's your kids teacher. 121 00:19:14,000 --> 00:19:32,000 We had a funny shower story that when a man how old Amanda was but grace was maybe five something so grace was little and I don't know where my mom was but my dad was out on the driveway washing the car and Amanda and grace were taking a shower. 122 00:19:32,000 --> 00:19:38,000 Well, they went to get out of the shower and the shower door the glass door would, would open. 123 00:19:38,000 --> 00:19:47,000 So they're in there and luckily grace, I mean she was little but she had some problem solving skills. I don't know how they did it, but they broke the door to get out of it. 124 00:19:47,000 --> 00:19:51,000 So they're broke or they're cut nothing severe. 125 00:19:51,000 --> 00:20:05,000 And so they wrap themselves up and towels and go out to the driveway and wet blood is just everywhere and my dad is like, what dad I know and he's thinking your mom's going to kill him right. 126 00:20:05,000 --> 00:20:12,000 And so, you know, grace always laughs, she's like, you know, she was her and Amanda were best friends and everything together. 127 00:20:12,000 --> 00:20:15,000 But yeah, so many funny stories. 128 00:20:15,000 --> 00:20:29,000 You know, we were talking earlier about birthdays and, you know, we all love our birthday but Amanda and Leanne and Josie are the same way and ironically, it's kind of fun that this episode is going to be out this 129 00:20:29,000 --> 00:20:33,000 the week before Amanda's birthday. 130 00:20:33,000 --> 00:20:46,000 But I always tease that Amanda's birthday is a national holiday she did turn 40 last year. And for every day, the year prior she told every person multiple times that she was turning 40 on Wednesday, July 20. 131 00:20:46,000 --> 00:20:53,000 And I even made her a t-shirt said in case you didn't know, I'm turning 40 on Wednesday, July 20. 132 00:20:53,000 --> 00:20:57,000 So like July 21, she started to count down for 41. 133 00:20:57,000 --> 00:21:02,000 So we have that to anticipate next week and I know you said a little Leanne and Josie are the same. 134 00:21:02,000 --> 00:21:10,000 It's an absolutely universal experience from from what I can gather and I've been doing this Down syndrome thing for a long time. 135 00:21:10,000 --> 00:21:22,000 My favorite birthday story was, you know, Leanne plans months and months in advance. And she decided we were going to, I think we were at Chili's or Appleby's it was one of those teen restaurants. 136 00:21:22,000 --> 00:21:34,000 And she gathered, you know, all she invited everybody because you know when she's out in the community announcing it inviting everybody so there she had quite a substantial group and lots of tables pushed together. 137 00:21:34,000 --> 00:21:51,000 And this poor 16 year old boy, who is our surger, Leanne announces of course it's her birthday and he said oh we can we can bring you a dessert and she's all excited and he comes and he sets it in front of her and she goes, aren't you going to sing. 138 00:21:51,000 --> 00:22:00,000 And he turns bright red and he kind of stutters and he goes, we don't really do that here and you know Leanne she's not taken no for an answer. 139 00:22:00,000 --> 00:22:08,000 As you said this is a national holiday and he sure is better sing and she didn't let it go so this poor kids beat red. 140 00:22:08,000 --> 00:22:11,000 Happy birthday. 141 00:22:11,000 --> 00:22:17,000 He probably quit his job that night. 142 00:22:17,000 --> 00:22:29,000 So much fun. So yeah so many fun stories of courage. You know it's as you said it takes courage to raise any child, but it takes I think creativity maybe. 143 00:22:29,000 --> 00:22:41,000 And you got to laugh a lot. We tease like Amanda used to hide stuff. And one time my brother and I couldn't find his keys and we're just teasing like maybe it's in the grill and sure enough it's in the grill. 144 00:22:41,000 --> 00:22:52,000 So and also one of my favorite Amanda stories is when because I'm so much older my mother my parents have got a town which meant we were in high school man let's have a party. 145 00:22:52,000 --> 00:23:10,000 Well you'd stay up too late and Amanda got up to crack it on so we lived on a lake. So remember one time I stayed up way too late with not really good up that she was some laying on the couch watching Sesame Street or Barney with her like one eye open like all right just don't go anywhere like and I guess I fell asleep. 146 00:23:10,000 --> 00:23:23,000 So I panic. Where is she like hoping she didn't walk out the back door into the lake. She was in that kitchen. She had a heart ice cream chocolate sauce and a spoon. 147 00:23:23,000 --> 00:23:36,000 And she would put the chocolate sauce in the cart and eating her ice cream and just like okay I'll fix my own breakfast breakfast of champions hey. 148 00:23:36,000 --> 00:23:42,000 So lots of fun lots of adventures any other fun stories. 149 00:23:42,000 --> 00:23:57,000 Let's talk about what you've been able to do with your blog and your podcast or blog and social media to be able to encourage other people I know it's been an encouragement for me and just to laugh at some of your stories like oh I can relate to that so how what 150 00:23:57,000 --> 00:24:15,000 can see are you doing and you're speaking in a group do you have parents reach out to a lot because you are known. When I first started the blog I never thought about anything other than keeping our friends and family updated on the adoption and our baby and I it didn't 151 00:24:15,000 --> 00:24:31,000 mean that other people would find it I wasn't opposed to it but slowly I started getting more and more emails from oftentimes it was from parents and what they would say is how reassuring it was that I had grown up in the 152 00:24:31,000 --> 00:24:45,000 down syndrome community and decided that I wanted to start our family by adopting a baby with Down syndrome because there's a lot of concern about the impact that having a child with Down syndrome will have on the siblings. 153 00:24:45,000 --> 00:25:03,000 And I think for us just our presence was reassuring to people but I've I've received so many messages all the time I received messages from people oftentimes it's new parents but even now I've got adult siblings that are starting to assume 154 00:25:03,000 --> 00:25:18,000 that they're starting to have a lot of different roles that are reaching out to me asking questions helping other parents whose kids are about Josie's age right now we're kind of going through puberty and trying to be respect her privacy but at the same time have open discussions 155 00:25:18,000 --> 00:25:34,000 and I think this is something we all have to face we all have to educate our kids regardless of whether or not they have a disability we're going to experience this so I'm going to you know share our journey you know with moderation obviously 156 00:25:34,000 --> 00:25:48,000 but just any sort of developmental things that we've gone through a big thing that I have found to be helpful our visual aids and social stories. And so, when we're experiencing a new situation. 157 00:25:48,000 --> 00:26:04,000 I will often write a little book for Josie and explain to her this change of coming whether it's a move or a surgery or new teacher or whatever it is. And just kind of explain to her that things are changing. 158 00:26:04,000 --> 00:26:22,000 And so, in this kind of connection. Yes, there might be some sadness or some, you know, bumps in the road but ultimately, it's for the best and just kind of keeping her aware of what's going on and letting her just kind of having the respect for her to 159 00:26:22,000 --> 00:26:39,000 to keep her part of the journey and because I think so many times and I'm guilty of this too is we just assume we don't give them enough credit like they don't really know what's going on they're in their own little world and the reality is she very much 160 00:26:39,000 --> 00:26:54,000 keeps when I explain things to her and blow down and oftentimes what that does is it gets a better behavioral outcome to because what we see is a lot of oppositional behavior with our love one down syndrome. 161 00:26:54,000 --> 00:26:57,000 They have a reputation for being stubborn. 162 00:26:57,000 --> 00:27:06,000 But oftentimes that's their way of saying wait a minute, I don't know what's going on, and I don't like it changes uncomfortable. And so I found a good way. 163 00:27:06,000 --> 00:27:20,000 I can blow down and explain things to her usually with pictures and visual aids. And so that's a lot of what I share also is sources that have helped along the way and if those could help other people then I'm happy to share. 164 00:27:20,000 --> 00:27:35,000 I love that. And I know we have a neighbor that was a teacher and worked with Amanda and creating books and things. And, yeah, I never thought about that and, you know, we've talked about this like tricks and different things. 165 00:27:35,000 --> 00:27:46,000 And I think it's hard for Amanda, she can't, it's I think the anticipation like anybody and the memory that she talks about it, she counts on it, she knows exactly when she's going what she's packing all the things. 166 00:27:46,000 --> 00:27:55,000 But then when we get to somewhere, she's not always stable as she is at home because her schedule is different. She's through her routine. 167 00:27:55,000 --> 00:28:08,000 And we were talking about this earlier that sometimes I think big crowds, there's a big group even as family, she has a little freak out kind of thing and starts crying and can't handle it. 168 00:28:08,000 --> 00:28:22,000 You asked me what what I thought that was I'm like, I think it's not the center of attention, which, you know, manages to be in the center of an engine. So, but and just talk, I love that you support other people. 169 00:28:22,000 --> 00:28:30,000 I can think of many stories where where it's supposed to be about somebody else but somehow Leanne or Josie have managed to steal the show. 170 00:28:30,000 --> 00:28:49,000 But yeah, I, it's funny that we've talked about traveling and that's another thing that has come up with our family is traveling is very difficult for our loved ones with disabilities or it can be because they are very routine oriented and they like their 171 00:28:49,000 --> 00:29:06,000 family is very familiar environment with Leanne she's got a couple extra medical concerns that that add to the complications so sometimes we do like a divide and conquer type thing because Travis and I decided a long time ago that we don't want our typically developing girls to miss out on 172 00:29:06,000 --> 00:29:23,000 experiences because they're things that Josie and Leanne wouldn't necessarily enjoy. So we call them our tipsies instead of being neurotypically developing. So sometimes we do tipsy vacations or just tipsy outings where we'll get a center for the other two, and we'll take 173 00:29:23,000 --> 00:29:37,000 the more adventurous girls on more of an adventure and it's going to be something like hiking and through rivers and or maybe amusement parks and things that Josie and Leanne wouldn't necessarily enjoy. 174 00:29:37,000 --> 00:29:54,000 We've left Leanne behind what we've gone on vacations in our aquatic in nature because she does not like to swim. She's afraid of the water, and it's difficult. So we kind of have trial and error and learned our lesson but you know what that's okay and I think parents have reached out to 175 00:29:54,000 --> 00:30:09,000 me and said thank you for alleviating my guilt about that because oftentimes it does make it difficult when you're trying to travel and that person you know isn't feeling particularly adventurous or wants to be in the hotel room or complaining that they want to go home it's like well 176 00:30:09,000 --> 00:30:23,000 there's a way to make that work to make everybody happy and I know in our case a lot of times Leanne would much rather be in her home environment. Right and I know like my mom's travels down a couple things without Amanda and most recently a couple years ago my sister and 177 00:30:23,000 --> 00:30:41,000 mom loved to come to Paris and mom was so worried about Amanda how's Amanda going to handle it. Well we exhausted Amanda we like played team Amanda like she went from one of us sibling one sibling to the other to an adventure to choose probably exhausted by my mom got out because we did all these things and had so much wrong with her. 178 00:30:41,000 --> 00:30:57,000 I think one thing you mentioned a little bit ago when you supported other people with their concern about sibling in a family that has somebody who's down center I always say we are better because of Amanda and not just me and my siblings but all my 179 00:30:57,000 --> 00:31:23,000 needs is a nephew and it's just a special bond and I think I mentioned the story of when we talked the first time but I remember going to a company picnic and I brought Amanda with me and my boss like said this out loud that on Monday he's like my kids were afraid of Amanda and I'm like oh that is just scary like that yeah 180 00:31:23,000 --> 00:31:41,000 and you say it out loud but I think yeah because you know any child with a disability but I think definitely down syndrome has their own unique a lot of unique characteristics that I see and hear with you talking about Josie and Liam that I see and hear with Amanda. 181 00:31:41,000 --> 00:31:54,000 Well it's funny that you mentioned that because I think we all have those experiences and for all the positive experiences which in my mind far outweigh the negative ones the negative ones stand out because they steam. 182 00:31:54,000 --> 00:32:14,000 I believe to your credit though with this podcast you know with the power of social media. You know there's less and less excuse for for saying I've never met somebody with Down syndrome because that fear comes from a place of ignorance it's a place of you know lack of exposure. 183 00:32:14,000 --> 00:32:39,000 And so now even I feel like anybody you know we can we can advocate for our loved ones we can share our story and everybody can say they've met somebody with a disability you just have to you know come on our page and see me on and Josie and you'll quickly realize there's there's nothing to be afraid of and there's just love and enjoy and richness in our lives. 184 00:32:39,000 --> 00:32:44,000 Yeah man there's nobody man it does not love and there's zero judgment in her world. 185 00:32:44,000 --> 00:32:45,000 Absolutely. 186 00:32:45,000 --> 00:33:03,000 I had a really interesting conversation the other day with a friend and how we got on this stuff maybe I was telling her I was in her you're going to be a guest and we were talking about Amanda and how joyful and happy she is how much she loves everybody and likes to be connected. 187 00:33:03,000 --> 00:33:15,000 And somehow we were able to within that conversation take it back to the last few years how you know Amanda thrives of being around people like most everybody does. 188 00:33:15,000 --> 00:33:32,000 And I think just because she is special that you know we notice these things differently but what we just all experienced of loneliness and separation and oh I know what the subject was putting kids in institutions how they died so young because they were so lonely. 189 00:33:32,000 --> 00:33:56,000 And they meet people need social connections and look at where we are now after the last few years of all the loneliness and suicide and emotional issues and people people's health and like it was just one of those a-ha thoughts like they're both tying into each other. 190 00:33:56,000 --> 00:34:13,000 Well it's true and there's that's another vote also in favor of inclusion within the classroom the schools are doing much better now when we end up growing up she was in an isolated special ed class and a separate wing of the building had no overlap with the typically developing kids. 191 00:34:13,000 --> 00:34:30,000 And now you know Josie is in the Gen Ed classroom with a one on one you know paraprofessional and all the kids know her they've known her since they were tiny so even though she might have some unusual conductor quirks they don't think anything of it because they grew up with it. 192 00:34:30,000 --> 00:34:35,000 So that's a pretty program to I don't know if your schools do that. 193 00:34:35,000 --> 00:34:37,000 Yeah. 194 00:34:37,000 --> 00:35:03,000 Yeah it's a different world and you know my father was a big advocate and when Amanda was born he helped start a group home for adults with disabilities and you know they wanted to bust her middle school or high school to another town to another high school and I guess like now she is going to our high school with our kids just like all my other kids she's not a different and I think that makes such a difference. 195 00:35:03,000 --> 00:35:10,000 Well and this is something I say all the time that generation our parents they were truly the pioneers because the generation before them. 196 00:35:10,000 --> 00:35:25,000 They didn't bring these children home they did put them in an institution so our parents were the ones who who made the decision we're going to bring these kids home and we're going to we're going to fight for them to have an education and even though the education isn't what it is now today it. 197 00:35:25,000 --> 00:35:45,000 You know by that standard it was it was awesome that they were having the opportunity to be in school if we perceived as people who deserve education and so they really did change so much that generation and now our generation just carries the torch forward and tries to look for more and more ways that to be you know inclusive and 198 00:35:45,000 --> 00:35:47,000 advocate for our loved ones. 199 00:35:47,000 --> 00:35:51,000 Yeah, yeah definitely took courage for what our parents did. 200 00:35:51,000 --> 00:36:13,000 But takes courage every day to live sometimes so what would you say to encourage somebody else that has a loved one that just diagnosed that they're having a baby with Down syndrome or maybe a sibling has down syndrome or all the different areas how would you encourage somebody else which ironically the word encourage me to give courage. 201 00:36:13,000 --> 00:36:30,000 I always say when when a new mom will reach out to me that I promise you that when you're 90 years old and you're rocking chair, you will reflect back on your life and consider this one of your greatest blessing. 202 00:36:30,000 --> 00:36:50,000 And I sincerely believe that we truly are lucky and blessed to be able to see a life through this prism that a lot of people have not had this opportunity that we have and you're talking about Amanda loves everyone you know we don't see color we don't see I mean Leanne doesn't care about what kind of car you 203 00:36:50,000 --> 00:37:03,000 drive or ideally you graduated from or what kind of handbag you're carrying she just sincerely loves people for people and to kind of be able to see life through that lens. 204 00:37:03,000 --> 00:37:18,000 That was what I missed when I went away to college that's why I continue to be involved with the special needs community. Ultimately that's why I decided I needed to have a child of my own with Down syndrome because once you've been a part of that community you're forever changed and forever 205 00:37:18,000 --> 00:37:20,000 changed for the better. 206 00:37:20,000 --> 00:37:22,000 Oh, I love that. 207 00:37:22,000 --> 00:37:24,000 Yeah. 208 00:37:24,000 --> 00:37:42,000 So true we are so blessed because of Amanda and Leanne and Josie and our life and just doubly blessed that I got to meet you and connect with you and you know my mother is alive and kicking thank goodness and doing well she turned 82 yesterday, but she's 209 00:37:42,000 --> 00:38:01,000 82 so yeah the reality of you know she's not going to be here forever and with always as the oldest the executive state of the state that something happens and it does is my responsibility but we always see that it's going to be a fight because he wants to we all want to 210 00:38:01,000 --> 00:38:13,000 get together and you know and there's a group home set aside for us who's got some plans but still I will keep your number close to me at all times to share some more stories. 211 00:38:13,000 --> 00:38:23,000 So this is so much fun and I love hearing the stories and so people want to connect with you find you with the best ways I will share this in the show notes to 212 00:38:23,000 --> 00:38:31,000 assure the blog is called Confessions of the chromosome Leanne hands so it's confessions of the chromosome Leanne hands calm. 213 00:38:31,000 --> 00:38:40,000 It's rarely updated these days because social media is just so much quicker and easier so you can find us on Instagram at catfish with ketchup. 214 00:38:40,000 --> 00:38:46,000 Gotta love that man's favorite food group by the way is ketchup. 215 00:38:46,000 --> 00:38:56,000 I will thank you so much Elizabeth I love hearing stories and connecting as I said we're going to definitely stay in touch but thanks for everybody for listening. 216 00:38:56,000 --> 00:38:59,000 Make sure you review the podcast share it tell other people. 217 00:38:59,000 --> 00:39:15,000 We do have the website why not today podcast where she can get t-shirts and cups and swag we're going to add some more to that and one of the ideas I have is with once we get it moving a little further along that do a monthly 218 00:39:15,000 --> 00:39:23,000 donation for anybody that buys a t-shirt or something that a donation goes to a charity which obviously stands in the room. 219 00:39:23,000 --> 00:39:33,000 So thanks again Elizabeth and thank you for everybody for watching and listening and the why not say podcast make sure you say why not today and do something courageous. 220 00:39:33,000 --> 00:39:34,000 Thanks Elizabeth. 221 00:39:34,000 --> 00:39:46,000 Thank you.