Episode 5, Part 1 - Interview with Sandra McElwee - Sean's Early Life, Perseverance

This is the first of a four part in-depth conversation with Sandra McElwee, the mother of Sean McElwee. Sean is a cast member of A & E's Emmy Award winning series Born This Way, which has already had four seasons. Sean also owns Seanese, a t-shirt company, and is a frequent keynote speaker. In this episode Sandra talks about Sean's birth, his early years, and beyond. She shares stories that show his perseverance, and hers, in overcoming obstacles like speech clarity, and discrimination. 

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Speaker 1 0:00

Yeah. Hello, welcome to born fabulous where we talked to parents and families of successful adults with disabilities and successful self advocates who have disabilities. My name is Gretta Harrison and today I have the pleasure of speaking to Sandra McElwee, the mother Sean McElwee, Sean Naca. We is a very busy 25 year old young man who stars and a and e's hit series born this way. He travels extensively giving speeches and he also owns a tee shirt company based on his level language called Shawnee's because Shawn wants to courage new parents not to give up on their dreams for their babies. His company Shawnee's donates onesies to down syndrome associations for their new parent packets and baskets. Each gift includes an encouraging letter from Shawn. Shawn always wanted a well rounded life that includes love and recently celebrated his one year anniversary with his girlfriend. He's now a celebrity and a fan favorite was delved into people's hearts. We cannot wait to see what he does next. Sandra McElwee is an active proponent of full inclusion for children with disabilities in general education classes and the community. She continues to mentor families with younger children behind her, which is how I first met her years ago. Sandra has written three excellent five star rated books, who is the slow learner, a chronicle of inclusion and exclusion, who's the slow learner at ventures and independence. And My name is Sean and I have something to share, which is a children's book. Sandra is Sean's chief drain facilitator. She also works in the medical sales field. Sandra has a lot of wisdom and knowledge to share and is a very busy lady. So I'm extremely grateful to have this time with her today. Sandra, thank you for being here and welcome. Thank you. Good to see you. Thank you for having me on your show. For everybody's knowledge. I'm in Virginia and she's in California. The wonders of technology. So let's delve into this. Sandra, why don't you tell us about Sean's birth please? Well, Sean was delivered by c section. He was nine pounds three ounces. So as he was deciding, not travel through my birth canal, the decision was made that he would be taken by c section. Um, unfortunately you, while he was in the delivery mode, the three hours of pushing, he ingested meconium and was born with pneumonia, they whisked him away to the Nicu. You know, pretty soon after he was born, I only got to hold him for just a minute. And Sean was the first person with down syndrome I've ever met. And so they whisked him away to the Nicu. I couldn't even sit up yet. Cause after general anesthesia you're nauseous. I was freaking out that I couldn't go with them. My husband went with them and Shawn, um, was, you know, had pneumonia and I was freaking out that he might die because Jim Henson of muppets fame had just died of pneumonia. He was, you know, I, all I could think was if a full grown adult can dive pneumonia, a babies certainly can too. And so I was really scared that he would, he would die. So when the doctor came in and explained that he had pneumonia and he'd be in the Nicu for 10 days on IV antibiotics, and then he said, well, by the way, he has done and we think he has down syndrome. And I was like, I will tell you about the pneumonia. I mean, I really didn't even care about the downside them cause I was more afraid that he was going to die later in the day. Uh, as I, I couldn't sit up for like eight hours without being nauseous when that was the bottom line. And there was a mall across the street from, from the hospital. And I sent my husband over to the mall to pick up, find a book. Um, he went, found a bookstore and found babies with down syndrome. And I read that in like three hours, was reading all the different things that could go wrong. I mean, it was, you know, not the most encouraging book in the world, but, um, but as I went through each thing, it's like, okay, I can handle that. Okay, I can handle that. And when I got to the part about, you know, hard defects, I was like, okay, hopefully it doesn't have a heart defect. Well, five days in the Nicu, the fifth day I of course had been discharged and was coming to the hospital everyday with my frozen breast milk from pumping and, and I walked in and I mean I just gotten there and this neonatologist comes up to me and says, we just did an echo and he has a heart defect and that was it. That shattered me. I was bawling my eyes out. I was there alone and all I could think was now he really is going to die. Of course it was a ASD is like the nothing of heart defects. It closes by itself. By the time he was five years old, he didn't even need surgery, but I didn't know that. And so anyway, it was, that was probably more traumatic to me than the down syndrome part was. All right. So Sean comes into the world and makes his entrance and he's in Nicu. For how long was he in Nicu for? 10 days. For 10 days. And then tell me about his health after that. Well, the pneumonia really damaged his lungs. Um, and every cold that came around for the next two and a half years, he caught it. And I mean, we were seriously in the pediatrician's office at least once a week. He was on antibiotics almost constantly until he was two and a half every cold. He didn't get over any cold. It always turned into pneumonia. I'm sorry. It always turned into bronchitis or ear infections. It could never just go through the 10 day roundup having a cold and go away. You can never do that. Um, he, he had RSV three times before he was a year old. We had nebulizer, you know, taking up our kitchen table and, you know, he was just constantly sick. And about the time he was two and a half years old, we heard about these vitamins that were, people were starting to give their kids and we investigated that and started giving him the vitamins and it really boosted his immune system. And he's been fine ever since. And what about Sean's hearing? Oh. So when Sean was two months old, um, there was an ABR that was given to him, which now I believe it's called a, B, a, e, r, which is a sedated, um, brainstem tests. So basically they have attached electrodes to his head and, um, introduced sounds and then it tells them based on brainwaves whether he's hearing anything. And it was determined he was completely deaf in his right ear at, um, at two months old and had normal hearing in his left ear. So we knew he was deaf in his right ear from the, from the beginning around three years old, a hearing test showed that he had about a 50% hearing loss in his right ear. So he had a hearing aid at that point. Um, but then about the time he was five or six, it was showed that his right ear was completely gone. So I don't know why it had some hearing it there for a little while and then stopped. Um, last, last year we actually found out about a product called a Baha. It's a bone conduction hearing device. So it attaches to the right side of his head and it collects all the sounds from the right side, which is his deaf side, but it transfers them through bone conduction to the left side of his head, to his left ear, his left inner ear. So it transfers them from the right side through bone conduction to his left inner ear. Um, his, his left ear is starting to, to suffer some hearing loss. It's probably though they there, they figured that it's middle ear, so his inner ear is fine. He had multiple air infections. I think he had eight sets of tubes over the years. Um, we just were always, you know, really diligent on his hearing. Wow. And that when he got the ball high and plant, that was well documented on born this way. I think season three. Yeah, it was on born this way. Season three. He was, um, you know, he, he has a needle phobia, doesn't like to get shot. The freaks him out. And when we got there, we told them, don't even talk about the IV, just do it. So what do they do? They had four completely different nurses come up to him and ask, are you ready for your ivy now? Are you ready for your eyes? And when a fourth one said it, he was like, that's it. I'm not doing this. And it was all about the IB. I had nothing to do with. I want to be able to hear. I do remember that. I do remember that. That was, uh, that was quite something, but it made a dramatic difference for him, didn't it? When he wears it, he doesn't wear it very often. It's unfortunately, so I thought it made a difference in his speech. Um, uh, you know. Okay. So I don't think so. I think the difference in his, he, well, he's got, okay, Sean speech, let's just talk about Sean's speech. Um, when Sean was three, we had a phenomenal speech therapist, private speech therapist who diagnosed him with a phonological processing disorder, which basically means he can, he doesn't hear the sounds the way everyone else does. So if you can't hear the sounds right, how can you make the sounds? Um, he had a Praxia, which you know how when you can't think of that person's name and it's right on the tip of your tongue, you can see their face but you can't get it out of your mouth. That's a practice yet. But it happens on every word, not just names. Um, and um, have phonological processing disorder or Praxia and he has another one too. I can't think of what it is. He has oral motor and verbal and Praxia. Um, and then of course the hearing loss, it doesn't help. So he has all these reasons why he's not going to talk basically except for he's my child and I talk a lot when I thought he as a baby, when we found that he was deaf in his right ear, we didn't know he was going to lose his hearing in his left ear. So I started taking sign language classes and I didn't even know people signed to their babies. I mean early intervention program was doing signing, but I didn't even know that when they signed up for the hearing for the, I didn't even know that when I signed up for the, for the Esl if thank you for the class. Um, and so we started signing, we'll add a year old. He had 50 signs and it was so funny because after he got his first birthday cake, whenever he would seek cake, he would just do every side. It's like, so one of these is going to get me cake. So anyway, he, so he started signing as a early age, um, at three years old he had two words he gets to say, he could say yeah, and he could say no. And that was it. Um, he did, he did, we were in festival one time and there was this cute children singing and dancing group and he, he kind of walks, started walking up to the stage. Well of course I get up to go get him because he's not supposed to be going to the stage. And he stands next to the stage and he points to the stage and the kids singing and then he goes, me do debt. And he was three. He was, yeah, he was, he was three. Um, I mean he had just turned three and I was like, oh my gosh. She spoke well, how could he be in a singing and dancing group? He can't talk. Right. He could definitely dance. I mean, dancing is on the 21st chromosome. We all know that. So the f that following Monday, I called the woman up that ran the program and I said, you know, I have this son has down syndrome, he can't talk, but he really wants to be a part of your group. And, and I just like giving this pitiful description of Shawn. And she says, oh, stop. We have many special children in the, in the sunshine generation. Bring him. I was like, thank you. So I took him, he had horrible behavior. He would run around during the practices and rehearsals and I thought, oh my gosh, this is never going to work. But the minute he was on stage, he was on and he knew every move. They just kept the microphone away from him. But I mean, he was verbalizing something in notes close to the sounds of the song and that was just, he just loved, loved, loved being on stage. And he had the, um, and he had all the dance moves down. He was born to be a star. He was born to be a star then. Yeah. I mean, he loved to be on a stage from the minute he saw there was a stage. That's a good story. But while we're talking about his speech, um, I think it's important because Sean and all of you, your family and Shawn have worked really hard on his speech and he's proud. He's proud of the progress he's made. He's proud of the work that he's done. You're, you're up front about it. And I, and I think we should talk about it because there's a lot of families out there who just assume, because Sean is a star now, he has a star because he's a star and he's on this series and he's won an Emmy. Oh that he's not like their kid and we, and that you and any other family who has a child who's doing great things, don't understand that their kid is different and their kid can't, can't, can't. And I think it's important to really show how hard, how hard you've worked. And he's worked. He, he's worked incredibly hard. So come to that in our family. Cat is a four letter word. The minute somebody says can't, it's like, oh, let's figure out how you can because you can't just not accepted in our family. Um, I think the biggest heartbreaker for me was when the first season of the show came out. Somebody had posted on Facebook, oh, my child will never be that high functioning. Well, first of all, we do not need to be classifying our children by their functioning level. Yeah. Because our kids function all over the place. Shawn has very poor writing skills. I mean, he cannot sit down and write, but he can dictate a letter that'll blow your socks off. He can do a speech that will blow your socks off, but he can't sit down and handwrite it. Um, social skills. He has his social skills have always been off the charts. His work ethic is fabulous, but so there's sort of our, our kids skills are scattered. Some things they're brilliant in some things, forget it, it's not happening. Um, so to actually even call somebody in your own child, low functioning or high functioning is, is horrible in my, in my opinion. Well, so this person had said, my child will never be that high functioning. Well, all I could think was, oh my gosh, they must have additional medical diagnosis and there are probably 25. And you know, I mean, you know, they're, they're, they're just feeling discouraged. And so I go and look at this person's Facebook page and her child was six years old and my heart just broke. It's like six years old. How can you give up on your child at six years old? Because at six years old, Sean was fully included in kindergarten and typical kindergarten, he couldn't talk. Well he talked, but nobody could understand a word he said because his articulation was a horrible, um, but somehow his classmates knew and his classmates would say what he said was, and they would translate for him and they, um, and he just, you know, was the prize of his class. Has his classmate flubbed him in first grade, the teacher, um, enlisted the students to be reading buddy or has mass buddy. And if he were, they were, they were done with their work, then they got to go and help shine instead of having the aide with him all the time. And so I would drop him off at his first grade class and the kids would be jumping up and down with their hands up. Can I be Shawn's reading buddy today? Can I be shown to anybody today or math buddy or whatever. And, and they were just so excited, you know, to be able to help Sean. Um, he still couldn't talk. I mean, he could talk, but you couldn't understand a word he said. It was jibberish time goes on with a Praxia, you have to hear a word a hundred times before you can say it. And He, um, his speech therapist would drill and drill and drill because he had a praxia because he had the diagnosis. He got three times a week speech therapy at school. And then we did his private speech therapy in addition to that. And we were constantly working on words. We went through the house and put in labeled everything cause he was able to read in first grade, it was sight words. He never learned phonics in, in high school I paid $5,000 to a program that was going to teach him phonics. He still never used phonics, he can't read phonetically at all. But we went out and had a label that said couch on the couch, refrigerator on the refrigerator, you know, everything in the house with label because of, you know, helping him to read. And we worked on how to say the words all around the house. We named our pets based on the sound we were working on when he was, um, so he was two and a half when our dog passed away and we got a new dog. We were working on the B sound, so he named the new dog Bu and then later we were working on the Fr sound. So we named our dog frosty. Yeah. So anything that would help repeat, repeat, repeat to get those words. Well, at about nine years old, Sean could do maybe a two or three words sentence and you might understand it. We had to constantly time to slow down cause he would run this words together and um, you know, he was starting to the point where you could understand one word here, one word there, but if there was a sentence, forget it. You still couldn't. Well time goes on. He's, you know, he's tired speech therapy. He doesn't like it anymore. He's in high school. They put him in group therapy. So they were working on conversation skills but still people couldn't understand. He could walk up to a typical person that he'd never met before and say something to them and they just look at him because they had no idea what he would say. But he told me he wanted to [inaudible]. Okay, so junior high, he was in drama class and that was because the only elective teacher that would have in was the drama teacher and the drama teacher. So the drama teacher in junior high, he, John loved the class and he was in productions and, but he didn't typically have lines or he had, you know, one word lines and, but he didn't care. He was on stage. That's where he wanted to be. So we go to high school and all I could think was, oh my gosh, we can have four years of drama in high school because this was motivating Sean's to speak and to speak clearly and try to speak clearly because he wanted to be onstage while he was supposed to. We got to high school. He was supposed to have drama his freshman year. But I got this run around story from the, um, the school psychologist. He'll be in trauma second semester. Well second semester's coming up and he brings the drama teacher who sits there and tells me, well this is a one year long class. If he starts now, he's already missed most of the class. And I went up, well why did he say we can start second semester if this isn't your last class? So the next year I had to write IEP goals. Sean will perform a or or recite a monologue. I had to look up and see what the drama class actually did. Um, Sean will recite a monologue in drama class. Sean will do this, this and this in drama class and write IEP goals and said that. So that way I would know he would be in drama class. So this particular teacher who in my book, I call him prima drama, um, really did not want Shawn in his class and he couldn't understand what Sean said. It made him uncomfortable and he just could not fathom why this person would be in his class. And as the year went on and he called a meeting before the second semester and said, look, our play is coming up and he can't be in the play. He can't even, you know, you can't understand anything thing he says. And I said, well, he doesn't need a line. He'd be happy to be a rock on stage. Um, you know, why in the world would you exclude him because there's plenty of non speaking roles in every play background roles. And he said, well, we have to rehearse and afterschool and who's going to watch him? Like he needed a babysitter. And I said, well, I don't think anyone needs to watch him because at this point his behavior was much better than it was an elementary school and junior high even. And I was, I was just taking it back. So long story short, um, I was gearing up to file a civil rights complaint because Sean was the only person in the drama class that wasn't going to be cast in the play. His role was to be passing out the programs and I show up to the play and he's not passing out the programs. And I panicked because I thought he was doing something he wasn't supposed to do. And the girl who was passing out the programs, I said, where's Shawn? He's supposed to be passing out the programs. And she said, oh, he's in the play now. Well, what had happened, they had dress rehearsal on Saturday and we had been at target for some reason, shopping for something. And one of the girls from the drama class sash on now, there were all these different vignettes and so the kids were rehearsing their Vignette, so they all assume Sean was in a different vignette than them. And she said, see you at dress rehearsal, Shawn. And I said, oh no, he's not in the play. And she went, what? He's not in the play? And I said, no, the teacher didn't cast him. He's going to be passing out programs. Well, she went back and told the other 40 students in that class that Sean wasn't going to be in the play. And they, they boycotted. They all sat down on stage and told the teacher, if you don't put Sean in the play, were not performing our of real inclusion. Right. That is so they advocated for him. And so I show up to the play and, and all of a sudden he's in the plate and I'm like, oh my gosh, didn't have my camera. You know, all these people that said they would come see him in the play and I go, these past net programs don't waste your money. So it was, it was just the most horrible scene you've ever, you can even imagine. Um, I didn't even have decent feats. I mean, it was awful. And then the guy, oh, so they had a little Shakespearian scene and they had Sean come out with a sign that said encore and he said, Oncor, well, they didn't have him come out by himself and do it, which he was perfectly capable of. They had a girl lead him out, like he was blind or something needed to be led to his spot on stage, um, and fit encore and then let him off the stage. So it was just disgusting. Anyway, there's, there's quite a bit in my first book who's the flow learner, a chronicle of inclusion exclusion about this story because he, he was just unbelievable. And he said to me, I don't have time to spend with Sean. I need to spend my time with students who actually have an opportunity in the entertainment industry. I emailed him when they won their mas and said, just curious how many of your alumni are on Emmy winning shows in the entertainment industry. He didn't reply, but I love that story so much. I love it for every part of it. The part about inclusion, the part about the ending, and you were very gracious when you sent that letter. You didn't send a, you didn't send a nasty letter like many people would have felt like you were. You were gracious in that and that I just love everything about that. That's such a good story. I really wanted to send them a middle finger emoticon, but, well, well, hopefully, hopefully he's, he's um, seeing the light. Maybe. Maybe there's a chance some people are so ignorant. I just don't think it's possible. That is sadly true. I never give up on Sean, so I shouldn't give up on him either. Right. That's exactly right.

Speaker 2 27:21

Okay.

Speaker 1 27:22

Thank you for listening to episode five of born. Fabulous. You just heard the first part of a four part interview with Sandra McElwee. I hope you enjoyed it and want to hear more. In part two, Sandra, we'll discuss and share stories about making goals. Sean's tee shirt, company, Shawnee's, and many more topics. To say more about Sean, please go to born fabulous podcast.com where you can also subscribe to the weekly podcast that are released on Fridays. You can access any podcast already aired at anytime on iTunes, Google play, or any major podcast directory along with the website. Now, please enjoy this clip of the ring lyrics by Melissa Regio, whose parents I spoke to in episodes one through four. The music and voice, or by Rachel Fuller, Melissa and Rachel are also the authors of love as opposed to one which starts the podcast.

Speaker 2 28:13

Okay.