Sandra McElwee is the mother of Sean McElwee. Sean is a cast member of A & E's Emmy winning show Born This Way. Sean also owns Seanese which is a t-shirt company, travels extensively for public speaking, and has a part - time job. Sean happens to have Down syndrome. In this episode Sandra talks about her faith beginning this parenting journey, Sean's goals and dreams, and the need for more full diversity in all forms of media. Sandra is honest, always laughing, and full of stories. This episode has strong appeal for families, self -advocates with disabilities, general and special educators, non profit leaders and staff, and anyone in the entertainment industry.
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Sandra McElwee is the mother of Sean McElwee. Sean is a cast member of A & E's Emmy winning show Born This Way. Sean also owns Seanese which is a t-shirt company, travels extensively for public speaking, and has a part - time job. Sean happens to have Down syndrome. In this episode Sandra talks about her faith beginning this parenting journey, Sean's goals and dreams, and the need for more full diversity in all forms of media. Sandra is honest, always laughing, and full of stories. This episode has strong appeal for families, self -advocates with disabilities, general and special educators, non profit leaders and staff, and anyone in the entertainment industry.
www.bornfabulouspodcast.com
Facebook Page: Born Fabulous Podcast
Instagram: bornfabulouspodcast
Twitter: @PodcastBorn
#BornFabulousPodcast
Hello, my name is Gretta Harrison. Welcome to born fabulous where we speak with parents and accomplished individuals who just happen to have disabilities. You are about to hear episode eight which is the fourth and final part of my interview with Sandra McElwee. Sandra as the mother Sean McElwee. Sean is a 25 year old actor who was a cast member of a and e's Emmy winning series. Born this way. Sean also owns Shawnee's, a tee shirt company, does extensive public speaking and has a part time job. Sean has down syndrome. Sandra works in the medical sales field is the author of three five star rated books about Sean's journey and as a revered mentor to many families behind her. That is how we met years ago. Now please enjoy this clip of love as the potion. The lyrics were written by Melissa Regio who was the focus of episodes one through four to music and voice are by Rachel Fuller. So when did you feel comfortable in this journey or have you ever felt comfortable? I have to, I'm gonna make an assumption here that you are comfortable because I think I know you well enough to see that you are, am I correct?
Speaker 2:Okay. You know, I'm, I'm a pretty religious person even though I cuss. Um, I, um, when I was 27, I remember going to my annual exam with a new doctor who I swear, remember Doctor Ruth Westheimer? Yes. This woman was doctor wrote, she says Little Hungarian woman and she was, she had the same accent and it was like, oh my gosh, I'm seeing Dr. Rose. And I've used, picked her out of my insurance cause she was caught with so just worked out and, and she says, you need to have a baby soon. You know, don't wait too long. And I'm like, I'm not even, don't even have a boyfriend. Why would I have a baby? And, and she says, you just don't want to wait too long because then you might not have a baby who's going to take care of you when you're old. And I go, where's that guarantee is that plenty of friends who aren't going to take care of their parents when they're old. And I said, who knows, my kid could have a disability and not be able to take care of me. Now, where that came from, I have no idea. So with the day Shawn was born, I remembered saying that could have a disability, but I, um, I was adopted and my biological, I met my biological mother when I was 26. And honestly, Sean was my first blood relative. I mean, I, well, I met my biological mother, we've were friends, um, and she's very nice person. I just not, I just, um, um, I just, this was my first blood relative really. I mean, my first, you know, I mean, he's my baby and he could have had three heads have been purple. I'm going to love him no matter what. So when he was born with down syndrome, I was like, okay, well this is the journey God's put me on, so I'm open to whatever's next.
Speaker 3:Okay.
Speaker 2:And that's what happens when you're really, truly, um, when you're really, truly surrendered to God's will for your life.
Speaker 3:Yeah.
Speaker 2:So you ain't never had faced. And from the beginning, from the beginning, Sean was 14 days old when we went to his first infant program and the infant program had a great parent support group part. So it was mommy and me style where you went station to station and physical therapist did, you know, showed you how to do things. So you do it, then you go to the speech therapy and they basically at that point was just speeding. Um, and then you go to the Ot and, and then the, these great grandmothers would come in and babysit the kids for an hour while we went and did pairing and discussion. Well, the very first parent discussion, one of the moms was saying, well, I just was hoping maybe my baby would die and I wouldn't have to do this. And I was shocked. I mean, here I had just been spent, you know, 10 days in the hospital was Sean terrified. He was gonna die. And I mean every time I got up in the morning, if I woke up before him, I was freaking out that he had died. I mean, I was like, and you wanted your baby to die. I could not fathom this thinking, but I realized really quickly that I was the weird one because everybody goes through this mourning process and this acceptance and you know, the whole Kubler Ross stages of grief. And I didn't, I never did. It was like this is my baby. He no matter what. Wow. So you were exposed to negative parenting early on and wow. Tell me this. What is it about Sean? The takes your breath away.
Speaker 3:Okay.
Speaker 2:Oh boy. There's so many things. Um, his creativity.
Speaker 3:Yeah,
Speaker 2:his insight. He's always been able, he has a sixth sense when he walks into a room, he knows who in the room is sad, who in the room is happy. He was, when he was little, he would walk up to somebody, some complete stranger and give him a hug and cause he and this person would look at me and go, Guy, you have no idea how much I needed that hug today. But Sean knew, he knew when he wasn't wanted and in junior high that the teachers didn't want him in class. They didn't even have to say anything. He just knew. And he knows when he's treasured. And, and you know, people love him. I mean he without words, he just knows,
Speaker 1:you know, I'm not as, I'm not anywhere as close to him as you are. Obviously. I've only met him a few times, but I'm, I'm just wanting to chime in here and say that I am so impressed with the way he is with fans. He is wonderful with fans. And I remember the last time we saw you was a couple of years ago and uh, trying to think of is Arizona or California, I guess it was California at the Down Syndrome conference, the National Down Syndrome Association conference. And uh, we, we were in the same hotel. We weren't in the main hotel, we were in the other hotel next to it. And we come out of the elevator and who's the first person we see? But Sean and, and my, and my daughter's like Sandra. And he was just so gracious. And then when we would see you at the meals, he was always patient and gracious and people don't realize that when you're like that you have less time to eat because you're been patient, gracious to everybody else. But he was just so wonderful and I've just always been impressed by that. And the couple of moments that that struck me on the show the most, we're a, I love the part where he was in the job interview and he said that he made mistakes and he was honest about that. And uh, I love the part where he was honest about wanting a girlfriend. He was just, he's just totally honest. And then I love the part where he and Stephen tried to see if they could live together. Not everybody makes good roommates, but you were smart enough to rent that house for a month and see does this work. And I just loved that, you know, that whole journey to, um, because people without disabilities go through the same day when they go to college or other, or they get out of college and have a roommate, they go through the same thing. So yeah, that's, that was wonderful. You've raised a good young man there. I think they knew that.
Speaker 2:No, I'm really proud of him. The very first appearance he went on, um, we, he was posing for pictures and things. And of course these parents bring their kids up to him and they don't know who Sean is. It's like Santa Claus, you know, when you're a little kid and you're like, who's this big fat man with a beard? It was kind of scary. Um, and this one little boy when did not want to walk up to Shawn and I was so proud of it because he said it's okay dude to stay there. And Shawn walked over to him and pose for the picture where the, where the little boy was at. And I think that that really says a lot. I agree. He goes to where the person is at instead of making them come to him. And he genuinely, I think likes his fans. He's, he's not thinking he, you know, he loves his fans. He, every minute of that, he's so energized, um, by, you know, by his fans, he's totally energized. What is, what, what are your, what are your goals, your dreams for Sean 10 years from now? Well, you know, our goal all along has been independence. To be able to live independently and have the support he needs to live in independently because he does have a live in aid and supported living staff. It's not like he's totally on his own. Um, you know, the dreams changed constantly and the goals change. Now that he has his own business, it's like he could possibly own his own house or own his own condo. Um, that's the, it could happen. And that was something we never really thought would happen until maybe one day when we die. And Sean inherits the money from selling our house can buy his own house. But I think, you know, if his business ever takes off that it could happen. Um, he gets on the Ellen show, which is one of his goals. You know what, I'm glad you said that cause that's on my list. Let's talk about that. Let's, let's, let's talk about that. That at one of one of Sean's goals is to be on the Ellen show. He's one of that. He's one of that for very long time as part of his keynote speech, even says in his keynote speech, my dream is to be on the Ellen show. Well he, he, you know, got this baby ones, he donation project and he just got applications from 43 different Down's syndrome associations in 10 different states across the country are 20 different states across the country. And he's, um, he's only got enough money to donate 361 zero ks. And the total after we added up all 43 organizations, the total amount of onesies was 1,585. So he's actually, we're getting ready to do a video plea to Ellen to say, can you help us? Can you help me? Me Being Sean, donate the rest of the ones that use and it's, it's less than$6,000 so I think it's probably doable for her to be able to, you know, come up with, because we see or help help other people with projects. So that's what, how he thinks now he, that's how he thinks he's going to get on this show.
Speaker 1:Well he's well. Well let's, and let's talk about Sean even getting on shows. Well first of all I want to, I want to say that when this, this is when we're recording this, this is not going to be available to listen to for several months. So by the time people are listening to this, there's a chance that Ellen will have had him on her show. And if that's true, thank you. That's wonderful. It could happen. But if it has not happened by then, there's a challenge to Ellen, your view, this Emmy award winning TV reality show star business owner and inspirational person in the most positive way possible. Interview him on your show, please. Because people, I think people might not realize unless they go and they go into the interview archives, how few people with significant disabilities actually get interviews. Could we talk about that situation?
Speaker 2:Yes, please. You know, and when born this way came out, you know how people find out about new shows, this typically talk shows, you'll see somebody that's in a movie go on a talk show and talk about the movie and then millions of people are watching that and then they go and watch the movie or whatever that, whatever the um, um, our TV show or whatever. Well, the publicity people for a, and he tried to get our guys on talk shows and then when Sean's business came out, we actually hired a publicist to help him get the word out about his business, could not get them on any talk shows. And I started looking at it, I said, okay, so who has been on a talk show? And I looked back and really the only people with down syndrome that have been on a talk show who talked, because most of the time they're there with somebody else, like a parent. And the parent does the talking and they just sit there. Um, and it was with Sam and Maddie, the guys who did the Zombie movie, they were on Conan and well, I met, I met their moms and their moms said basically what happened was one of the brothers went to film school and has a friend who's a producer on the Conan show. And his friend got salmon Maddie on there. But guess what? They're brothers had to sit behind them in stools. I don't know what they thought Sam and Maddie were going to do. Um, and I mean, and Sam drop the f bomb on the show. And I mean, so, so you know, what are the things I've been told is people are afraid because our guys are unpredictable and all I can think of is don't we all remember when Tom Cruise jumped up and down on the couch on the Oprah show?
Speaker 1:That's true. And I remember somebody flashing David Letterman and many other things. Yes, yes, they don't. They like him predictable. Well, I think it's, I, I, I, I want to throw this challenge out to l and if it's necessary, um, I want Ellen, I want you to realize that the world of disabilities is an unknown minority. It's really the last civil rights struggle. I'm not saying that the other civil rights struggles have been solved, so please don't misunderstand that. I know that there are ongoing, but I'm saying this is one that not enough people talk about. And there's another example. Would you, can we talk about Megan Kelly? It shows not even on anymore. Can we talk about that example? What they said? Okay. Well yeah, I would like to hear her. I would like her to hear this.
Speaker 2:Sean's publicist had arranged for Sean and John and Rachel to be on the Megan Kelly show, but, and he requested they wait. We wait to do the show until the season fork came out. Um, so we waited and when season fourth came out, we went, um, we went to say, okay, no, now the cast can do the show. Well, they said, we just did a story about somebody with down syndrome six months, six weeks ago. So we can't have too many stories at the same time. And what it was, it was Emily Kingsley and Jason Kingsley talking about a documentary that was coming out about them and, and other people with disabilities. That was, I think it was at the movie theaters even. I never got to see it, but um, it was like really? So you can only have one person with Down's syndrome. You can't have two people with down syndrome in a six week period. Did you only have two black people in this six week, one, one black person in a six week period, one person who was gay in a six week period. I mean, come on. Who even thought there's a quota for people with Down Syndrome on TV? And that was just unbelievable. So that was the first possible talk show they would have been on and it didn't even happen.
Speaker 1:So Ellen, did you hear that? Ellen? Thank about it. Just think about it. Let's do the right thing or not because he has down syndrome because he's on an Emmy award winning TV show because he has a company because he's doing this great project with the onesies. Those are the reasons you have him. And if somebody else with a significant disability comes up the next day, interview them too. Hey Man. Alright. Okay. So I'm, I'm glad that we talked about that. All right. Sandra, what do you wish you could change?
Speaker 2:I wish that every child would have fully included education experience with no argument, no questions and with all the proper supports that they need. Um, when, when Sean was an elementary school, he was the first student fully included with special education needs and kindergarten in his whole school. Um, he was transitioning when he transitioned to, between we, we actually did special ed kindergarten and then we did regular ed kindergarten and from special ed kindergarten to regular ed kindergarten, the school psychologist tried to talk me out of this for an idea of inclusion and she said to me, you really think he's going to learn as much in a regular ed class. What if, what if, what about the other kids and he doesn't like to come in off the playground now what if he doesn't come in off a playground? And I said to her, I said, well, I've done my research and from what I can tell, he'll learn more in a regular ed class simply because he'll be exposed to more. And the other students, they're going to see him as their classmates. And as far as the playground is concerned, that's why we arranged for him to have an aid so she can work on getting him back to class and the teacher can take the rest of the kids back to class. Um, so yeah, we do want full inclusion for Sean. So he starts elementary school and does you know, has kindergarten, first grade? Well, third grade and first grade, the school psychologist was transferred to our school and so she was able to observe Sean in third grade. She came to me and apologized for trying to talk me out of inclusion. And she said to me, I can actually see that he is learning more. She said, but you know, the biggest thing, I don't have one bully in third grade that I'm dealing with. She goes, I have a bullying one or two bullies in every other grade, but there's not one bully in the whole third grade class. Um, you know, and there was four classes, so it's not just one, not just one classroom. But Sean had been, um, they, they mixed it up each year. So he had been met the other kids over the years. Well, fourth grade and third grade. You also had a new principal, fourth grade. She transformed the whole school to an inclusive school and she had IEP meetings with everyone in the special ed classes. She invited them to be in a regular ed class and with all the supports they needed or they could transfer to the next school over because that's where they were moving those classes too. Um, fast forward a few years. Sean's already in high school. I go to, to vote and we, our elections are voting was at that elementary school. So I see the school psychologist as I'm leaving after I voted and she said, come in my office, I have to tell you a story. And so I go in her office and she said, you know, fit Sean left. They've moved kindergarten classes here. I mean, I'm sorry, preschool classes here, special ed preschool classes to this campus. And she said, we had a little girl who was transitioning from preschool into um, into kindergarten and this was her neighborhood school. We sat in this meeting and her mother pounded the table. I want to see every,
Speaker 3:okay
Speaker 2:special education, kindergarten class and the district so I can decide which one's the best for my daughter.
Speaker 3:Okay.
Speaker 2:And the school psychologist and the principal said to her, we'll make sure you can tour all the classes, but just so you know, your daughter is welcome to come to school here. And she said, well, there's no special ed kindergarten here. And they said, no. Our kids, our students are fully included with the General Ed classes. So she would be in a regular ed class and have all the support that she needs. And the mother said, wash, do you gonna learn as much in a regular ed class? And they said, actually, she'll learn more because she'll be exposed to more. And she said, well, what about the other kids? And they said, well, she's, you know, in our school, our students with down syndrome are our most popular students. And she said, well, what about when she doesn't come in off the playground? And they said, well, all of our aides have been trained and positive behavior supports and they know how to handle any behavior. And so that's what I want to see. I want to see the whole world, um, inclusive where people go to school and maybe the parents think their kids should be in special ed, but instead they say, no, your child is going to go to the same school with your other children, with the other kids in your neighborhood and they are going to be supported. Um, exactly. Whatever their needs are, are going to be taken care of. That's what, that's what I would like to see change. Because until that happens, the world won't change.
Speaker 1:You know, I love that story, Sandra. Not only because of the transformation, which is probably the most important part, but also you probably have one of the few apologies from somebody in a school district. I don't think I've, I don't think I've ever gotten one and it, people I know, I don't know that they've ever gotten one either. So you and anybody I know who's had their child challenged, um, and, and wanted them to be fully included, has run up against roadblocks, you know, and like I said, I can't, that's the first apology on record that I've heard of too. So that's great. That's wonderful. What do you think of the state of disability awareness and inclusion acceptance today? I know that you said what your dream is, but now you know where we are. You know where Sean was, you know where we are.
Speaker 3:Okay.
Speaker 1:What do you, what do you think? And weight.
Speaker 2:It's better. It's better. Um, but we've got still so far to go. There's so many. Um, there's so many prejudices still. There's so and, and, and in our own community. Well until our own community stops classifying ourselves are our children as functioning levels. The rest of the world isn't going to stop classifying them with functioning levels until we have every TV show out there. Um, with someone with down syndrome on the show, even just in a background role sweeping the floor and then in the Bagel shop and or the doughnut shop for that, you know, show that has got based in a donut shop. Um, you know, walking down the street in the background. I mean, just anything until we can see people with disabilities, um, all the time.
Speaker 3:Okay.
Speaker 2:Nobody will be ever be comfortable with somebody with a disability if you didn't grow up with somebody with a disability like me. Um, Sean was the first person I ever met with down syndrome the day he was born. So one thing I think born this way has done a fabulous job is introducing though the world to people with down syndrome and the comfort of their living room. And that in itself is making a huge difference. But you know what? We need more shows like born this way and born this way. Needs more viewers until we're on talk shows and more people know about the show and now that exists, that's not going to improve either. So it just goes right back to all of the levels of inclusion falling into place for true acceptance to really be a reality
Speaker 1:and for the disability community to unite as well. Absolutely. Behind the show, which, which they should, um, the soft bigotry of low expectations. I think that's, I think that's what you're talking about too. Absolutely. So, well on that note, Sandra, I'm going to say thank you so much for your time. It's been a wonderful discussion. I think we could probably talk for days, but thank you for, for all you do. I want the other parents out there to know and not be shy to reach out to those ahead of them and learn from them. There's so many people like Sandra who are out there willing to lend a hand to the people who are behind them and help along the way. And I appreciate that you've done that for me and many others. And I Adore Sean. My daughter adores shine. Everybody Adores Shawn. And I look forward to interviewing him someday in the future as well. Okay. Thank you. Thank you. Thank you, Sandra. Bye. Bye. Bye. Thank you for listening to the eighth episode of born fabulous. I hope you enjoyed it and want to hear more. Episode nine will be the beginning of a four part interview with Jeannie Harris, the mother of Tim Harris. Tim is well known for the restaurant he opened called Tim's place, counting hugs and his successful public corporate speaking career. Jenny has much wisdom and joy to share mixed in with some great stories. Her first episode comes out May 24th to learn more about Sean and see some photos, go to www.warrenfabulouspodcast.com if you haven't already, please subscribe to born fabulous podcast on iTunes or any podcast directory. Now, please enjoy this clip of the ring. Lyrics are by Melissa Regio, who was the subject of episodes one through four. The music and voice are by Rachel Fuller.