Growing Bold and Down Syndrome

Growing Bold with Down Sydrome

Welcome to the Grow Bold with Disability podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most and to  help us live bolder, healthier, better connected lives. I'm journalist Pete Timbs and today's episode of Grow Bold With Disability is Growing Bold and Down Syndrome and my guest is Rosanne Stuart, mother to the amazing 23 year old Madeline Stuart.

In this episode, we'll discover who Madeline is, her struggles with Down Syndrome and how she rose to become not only a supermodel but the world's most famous model with Down Syndrome.

Rosanne, welcome to Grow Bold with Disability. Thank you so much for having me. Now 23 years ago the beautiful little Madeline was born with Down Syndrome. How did that impact you guys when she was born back in the day? Things were very different 23 years ago. I mean when Madeline was born I didn't know she had down syndrome. I actually didn't even know what Down Syndrome was having being raised in a world completely void of disability. I grew up on a boat. I didn't go to public school until I was in high school. There was nobody with a disability in the little school in Cook Town, so I didn't know anything about disability.

And when she was born, the doctors took her away immediately and they came back a few minutes later. They didn't bring her back. They just came back on their own. And they said to me, I'm very sorry, we believe your daughter has Down Syndrome. And I said, "What is Down Syndrome?" And they said "It's an intellectual disability. She'll never mature mentally past a seven year old. If you have more children it'll be detrimental to those children. You know you'll never have a life or career. You have options. I can tell you more about it. We'll send the counselor to see you."

Wow, you've just given birth. You've been excited for nine months, you have this beautiful baby. How did that make you feel? I've been excited since I was 10. I said to my mother, Mom, where do babies come from? I want one. I mean, the only thing I ever wanted was to have children in my whole life. And when I decided I was gonna have a baby, I fell pregnant within two weeks. I had it all calculated. Got the thermometer out. I knew I was getting pregnant, and during her pregnancy I was giddy with happiness. I mean people only had to put their finger in the air and I'd laugh at it. Seriously people thought there was something wrong with me, I was so excited and so happy. And he said this to me, and I just looked at him. I didn't understand and was a little shocked. As with I think all parents, I mean, I can't speak for all parents, but I believe that most parents go into shock because they have this vision of what's going to happen. And he's telling me this.

My mother was crying uncontrollably, and I just said, be quiet Mom and I looked at him and said, OK, that's fine. They put me in a private room. I cried for 24 hours. I wouldn't have visitors. I didn't I think I told everyone, didn't want visitors because that negativity was too much for my mind to cope with. You know, I was so scared someone else would say something negative that I just shut everybody out. And after three days I started seeing people again and decided that everything was gonna be okay and Madeline was gonna be fine and we were going to conquer the world together and love each other, and that's what we did.

But the funny thing is, I put a thing on my Instagram recently and I said I'm so excited, I've just got a working visa for the United States and I got one as an O2 because Madeleine got a working visa. She's the only person in history of intellectual disability to get a working visa in the United States. And I got one as her manager. And I said, who would have known 23 years ago that I would be sitting front row at New York fashion week, getting invited to the Bird Cage, getting a working visit the United States? Why didn't the doctor start with that?

What was some of struggles you had? As you said, you had no idea about disability. You had to learn everything from scratch. What was that like? What with her growing up? Well, look, I was working full time, and then I left my career to go to uni and I was doing part time and full time study at the same time because I wanted to get it finished by the time I gave birth to her. I was in my first exam when I went into labor. So after she was born, I completely left all former work. She had open heart surgery at eight weeks of age and after we got home, I just started therapy with her. I would work with her 10 hours a day and it's all I did. She was going to be successful. I had this thing in my mind that I wasn't gonna lay on my death bed and ever regret that I didn't do enough for my daughter, you know? And that was so important to me.

So yeah, there were so many obstacles having a child with Down Syndrome. You have to teach them to sit up. You have to teach them to stand up. We have to teach them to put weight through their legs so they walk. Madeline walked at 15 months. The earliest anyone with Down Syndrome had ever walked in Australia, that's what the therapist told me. Anyway, um I mean, I was just that sort of person. I'm very much an overachiever, and to me, I wanted Madeline to have every advantage. So I just worked with her and worked with her. And I didn't go back to work until she was 4 or 5? Because the therapist told me that she had to go and hang out with people her own age, because only through hanging out with people her own age could she learn to communicate and to get along with her peers because I couldn't teach her socialization.

What sort of support did you have back in those days? Well we still had support. I had a speech therapist and an occupational therapist. We were in hospital a lot when she was born. I mean, Madeline was very, very sick up until she lost all the weight when she was 17. Madeline was always in and out of hospital. I think we were at the doctors 300 days of the year in the first year. Um, every winter, she would get pneumonia and her lungs would collapse. I remember one term at school she only went to school for one day in the whole term. When it was winter because she was so sick.

So I mean, I was a single mom, and I had a little bit of support for my parents for a while. But then my dad ended up having a lung transplant, and then he passed away. But while he had the lung transplant he was on pretizone and he couldn't be around her when she was sick, and she couldn't be around him when he was sick. So, you know, we didn't see them a lot. But you know, it was her and I against the world, and it always has been and always will be. And it was amazing. And I think it will continue to be amazing. Yeah.

So for people who are unfamiliar with Down Syndrome, give us just a little insight into the life of a child with Down Syndrome. So the common understanding is everyone dancing and is always happy, loving, and that is true to some extinct. But people with Down Syndrome are exactly the same as you and I. My daughter has her own opinions. She's very stubborn like me, she is very opinionated like me. She's very passionate like me. Most people with Down Syndrome are just like everyone else. They experience everything like you and I do. Except for people that have an intellectual disability, they just do it a little bit slower, but they still have the same wants and needs. Madeline's gonna get married. She's told me, and you know she's gonna live a long life and you know everything she wants to do I let her do.

You're going to experience something with a child with Down Syndrome that you won't experience with the child without Down Syndrome. She would run and throw herself in my arms every day after school, even in hospital. She wanted me to drop her off at the gate and come in. She never got embarrassed about me. She thinks I'm her hero, Um, the love you get... I look at people that don't have children with Down  Syndrome, and then, you know, you walk down the street and people stare at you and I stare back, and I know they're probably thinking, Oh my God, you've got a hard life. But I look at them and think, Oh my God, you've never experienced true love and I feel sad for them for that reason, because it can't be described. It really can't.

The bond I have with Madeleine is such a blessing, and I'm not just saying that because I have a child with Down Syndrome because when I was young, I used to think people just say that because that is their way of coping. If I had a magic pill and they said they'd give it to Madeline to get rid of the Down Syndrome, I probably do it for her. But I wouldn't do it for me. It would be the saddest day of my life. I do not want her to change. The love the beauty, the kindness. The way she accepts people. She doesn't judge people. She's never said a horrible word to anyone of her life. She's just amazing.

So what was life looking like for Madeleine as she was getting older, going into the adult world with job prospects. What was that all? What was the future holding for her? So Madeline's job that she wanted was to work at McDonald's, UM, or a cafe meeting people socializing, wiping down tables, doing dishes, hopefully taking orders. That's what she wanted to do. She wanted to work in a restaurant or cafe, and that's what we plan to do. I even bought a block of land where I live in the outskirts of Brisbane. We have 102 acres here and I was gonna set it up for a not for profit for people with disabilities to work on a farm, and a Convention Centre. It was my plan. Then Madeline went viral, and we haven't basically been in Australia since.

So when did all this change? In 2014 Madeline was very overweight. That is one thing about people with Down Syndrome. They are prone to be overweight. And the reason that is, well, it's a few reasons. Sometimes they have a problem with their thyroid, but most the time it's just because they enjoy food and they don't mind how they look. You know, Madeline, if you show picture to Madeline off her when she's overweight and she was 20 kilos heavier than she on it is now. You wouldn't recognize her, but she will pick the one with her favourite dress.

People with Down Syndrome do not judge on weight, age, looks, anything like that. It's your personality and how you treat them. So I think that people just enjoy food and they don't have the hang ups we have. So they don't mind if they were over weight. She did lose a whole ton of weight, 20 kilos.

How did she achieve that? Well she came in one day and we were at dance? It was really hot and she couldn't keep up with the friends cause most of the class, even thought it was a special needs class had autism, so they didn't have a weight problem. And I just said to her "Darling, what's wrong?" And she was crying. "Can't you keep up your friends?" And she said, "no". I said, "we're gonna have to be fit." And she decided that was gonna be what she did. So she started swimming every day. We threw out all the junk food and we just filled the house up with healthy food. And Madeline reduced the sizes of her food like in the afternoon she used to have two pieces of sushi. Now she will have one. So it was just healthy eating and exercise that's all it was.

And it was just finding an exercise that she loved, like at the moment, because she goes back to New York fashion week on the 31st of this month she is at the gym, twice a day, every day with a personal trainer. She loves the gym and if I don't get her there she is really annoyed with me because she wants to be in the gym, because to her, that is where her friends are. She loves all the personal trainers, they all know her. She's there every day. Everyone high fives her. It's her social space, and that's where she wants to be.

Wow, so she she lost all this weight. So how did the modeling part come into it? Okay, so I took her to a fashion show. So when she lost all the weight, the thing that really changed was she got healthy. She'd been so sick for so long. So all of a sudden she wasn't getting sick. She wasn't getting the flu. She wasn't getting asthma. She wasn't you know all these things that had been playing with her health stopped. And the Ecca was just about to start.

I had been to the Ecca my whole life when I was a girl and the thing I loved to do was go to fashion shows. In the 15 years prior, I'd never been to a fashion show at the Ecca because Madeline was always sick. And as soon as she got well, I decided to take her to the Ecca, do the mommy daughter thing and show her what I did when I was her age. But as we walked into the Ecca and as we walked into the fashion show, it hit me that as soon as she saw it she'd want to do it. And the reason I say this was the week before I took it to a Rabbitohs football game and she was wearing one of their jerseys and she was so annoyed with me because she was wearing a jersey and she wasn't on that field. So she wants to do everything. So as I walked in, I went, Oh God, what have you done? And as soon as she saw the models on the catwalk, she said, Mom, me model and she just fell in love with it instantly. So I went okay.

To me modeling wasn't traveling the world modelling that she is now. To me modeling was going and getting some photos done, and your make up and hair done at a place. I didn't really understand what the fashion circuit was. Not really what modeling was when I was a kid. I dabbled in it when I was a teenager and it was just going to get some photo shoots done and that. So I went OK, well, we can do that. That won't be hard. I'll just pay to get a fashion spread down. You know, we'll go and do to a photo shoot.

So I took her to get the photo shoot done. And, you know, after having a child for 15 years, Sorry. Sorry. It was 2015. She wasn't 15 she was 17 was in 2015 having a child for 17 years, always being told that your daughter had Down Syndrome, always seeing it through the eyes. Like I never saw her without seeing the Down Syndrome because the doctor told me before I got to see my daughter. So I always saw the features. I always saw that she was short. She was always a little bit overweight, so modeling had never entered my mind. Then all of a sudden, these photos were up on this screen after they got back to me and said they are ready to be seen and here was my daughter. Long red hair down to her bum, completely glamorous makeup hair, fit, thin. And I looked at them and it was like an epiphany. I thought, Oh My God, Madeline really could be a model.

Back then, in 2015 you didn't see people with Down Syndrome on social media done up and glamorous. You know, the pictures you saw were people that were overweight, and most the time they had their tongue out and it wasn't how they should be portrayed. And I went to one of my girlfriends and I said to her, "How did I get this out there? Because I know it's gonna take off". And she said,"What you need to do is make a public figure page on Facebook", so I did. But we didn't put them on to become a model, we put them on to encourage people get fit, because that was the other thing that I was head ingrained in my brain, that people with Down Syndrome were over weight and all of a sudden my daughter wasn't overweight and I wanted other parents to realize that. So they just didn't settle for their young people with Down Syndrome being overweight. So I put this post up that said, "Get fit and healthy, live a long long life."

It went completely viral. 7.2 million viewers overnight. Within a week she was published in 150 countries around the world. She was on the front page of the travel newspaper that's were on every platform in Europe with the trains. She was published in Iceland, in Mexico, all through the USA, Sweden, China, Japan. She was everywhere.

So then how did you make that step? How do you make the step to actually go on to all these amazing catwalks that she's done well after the after the all the images, went out in the newspapers and magazines and everything? The next thing were the phone calls, the first phone call we got was from Good Morning Australia or the Morning Show. Sylvie Jeffries flew up to Brisbane and she did a story on Madeline. Then The Project contacted us and we did the story with The Project and then Sunrise did the story and all these TV stations and then TV crews turned up from Japan to do a story on Madeline. And then, you know, people from the around the world just started flying in.

And then the people started ringing me, saying, can she do this catwalk? Can she can promote this product? Can she do a photo shoot for us? When Madeleine went viral for the first 6 days I didn't sleep, I just literally contacted people on social media, thanked them for sharing her story, asked them to keep sharing it and just kept it going so that I knew that she'd probably only get one chance ever of going viral. And that if my daughters life was gonna change I was going to everything in my power to help it change. Yeah, and she's done some amazing stuff.

Seems like name some of the catwalks she's done or the magazine she's been in. Well, we're just about to fly out next Friday for the eighth season of New York Fashion Week and the first person with Down Syndrome to ever walk the catwalk in London Fashion Week, Mercedes Fashion Week China, Paris Fashion Week, Runway Dubai, Russia, Astra Harm Fashion Week. She walked in all sorts of fashion shows in America, from Birmingham to you know, Florida. She's, um, what else has she done? She's went to Albania Last year. The president of Albania asked her to come over and model in the palace over there. We've been to Lebanon. We've been to Uganda and China. I mean the list just goes on it just It just keeps going on.

Do you have a proudest moment? To me as a businesswoman was when she was in Forbes magazine as the Game Changer in the fashion industry. Because Forbes is a business magazine as was Vogue I think and also for her for getting her working visa. To me, they are the biggest accomplishments, and also the very biggest accomplishments I must say, is all the work she's done for diversity and the way she's helped change and mould the fashion industry. So everywhere you go now, you see people with disabilities on the catwalks and doing campaigns. I mean, that wasn't happening before Madeline came along. That wasn't happening before. She did the catwalks.

Now, like when we went to Birmingham Fashion Week, she walked in. The following year, they had another young boy with Down Syndrome on the catwalk. Everywhere she goes it opens people's minds so that it can happen, and then it happens over and over again. So it's that's what I'm most proud of, the way she's been the fight for equality.

So these fashion events are notoriously catty backstage, how did the other models find her? Oh, they love her everyone loves Madeline No, no, seriously, they do. As I said, she walks in and I walk in a room and I've got my backup. And I'm waiting for what's gonna happen next. Any room, even I walk into a room with friends. It's just my personality, you know, I've always got my guard up. Madeline walks into any room with her arms out, having, loving, wanting to be around people. And everybody reads that instantly feels so secure with her and they just love her. Plus, most models don't have the following she has, and I mean she really, even though she doesn't do all the same work as, these big supermodels like Karlie Kloss and the Jenners and things are that she has had the same amount of publicity.

So when these other models see her, they all know who she is. I mean, we we did a show last season in New York and the make up artist came up to me and said, "Is this Madeline Stuart?". I said, "Yeah", she said, "you mean the Madeline Stuart". She said "Oh my God can I please have photos with her because you know to them she's so accomplished", there's no cattiness at all.

She has her own fashion label am I correct in saying that as well? Yep, she has her own fashion label, which she's shown three seasons at New York Fashion Week. The first season was two and 1/2 years ago. She hasn't shown in the last 12 months because she had a heart scare last year, but she has got a fashion label 21 Reasons Why and probably next year we'll start working with it again. And she'll put her next style of fashion out.

What you just mentioned she had health issues recently. What was that? What happened? So at the end of at the end of 2018 Madeline went in for a yearly heart check because she had open heart surgery when she was a baby. And they told me that she was in heart failure and her heart failure was a four out of four, and she needed to have open heart surgery to fix her micro valve. So she went into hospital pretty quickly. Um, and she had open heart surgery which was on the fourth or fifth of December. So might have been the ninth December. But then she had a lot of complications, and we ended up being in hospital for a month and didn't get out of hospital until the fourth of January of last year. We thought we'd lost her,  pretty harrowing times, but then she was in you know for three months. She couldn't work, and then she was cleared for work in March, then she started traveling again and working.

So what's does the future hold for Madeline? Well as I said she's just about to head back to New York. She's got a really big show coming up, which I can't mention at the moment, because it's still in confidential stages that everything's booked. Everything signed, but they haven't released it to the public yet. That's a really big show and then in March we're going back to the States because we've got another contract with a big company over there Cruise Lines. And we have a gig in July, actually, down at Port Macquarie here. She's doing the speaking gig for about 700 delegates. And then, of course, will be going back to London, Milan, Paris and New York in September and in between that I'm sure, you know, there's always contracts coming up with people wanting her to do things, a lot of press.

So what about the dreams of the cafe and looking after customers and clearing tables? Is that still there? That's my dream. I've still got that dream. Anything that doesn't put me on a plane every 2 to 3 weeks is my dream. But as long as Madeline wants to be a model I'll support her 100%. I mean, I'm so proud of her and, you know, it's hard work. It's tiring. But, you know, every single morning and every single afternoon and 10 times during the day, she tells me we are going to New York next Friday and I'm going to be packing, so you know, that's what she wants to do. But that's still my dream.

You know, I still have the property, and one day when she's not traveling as much we'll start the charity up again, and we'll set up.. now we have the NDIS it won't just be a conference centre. I'm assuming it will be a respite center or even a complete community where we will build housing and everything for people. Eventually, that's still my dream and also, give her a place to grow old, where she will be around her friends and support. So you know, one day we'll get back to that.

But at the moment, you know I'm a building surveyor and I run my own company. Madeleine has her own dance school which she started four years ago, which I manage. And then I also manage her career. So I'm working about 16 hours a day at the moment. Busy, busy lady.

Now, as you know, this podcast is called Grow Bold with Disability. We always like to finish off with this question, and that is tell us what living a bold life is to you? Trying to keep up with my daughter, trying to live to the things she has achieved. I mean, seriously, you know, I created Madeline, but then she created me and living a bold life to me is having the courage that she has. You know, she really is amazing. She steps out on that catwalk and she's not insecure. She thinks she can take over the world, and I think being bold is trying to live up her standards. She is pretty amazing.

But I think also being bold for the general public is inclusion. I mean, a lot of people don't know how to act around people with disabilities. It feels uncomfortable to them. So they just walk away. And I think they need to be bolder because, you know, people with disabilities just want to feel included as well. They just want to be loved. And they don't want, you know, to not be a part of society. So I think everyone needs to be a little bolder. Everyone that sees someone with a disability standing in the line of the cinema go and say hi and ask them what they're going to see the first time. It might be awkward, but after that it's gonna be great. And you're gonna meet some people that would change your life and make you a beautiful person.

Rosanne. Thank you so much for joining us today on grow ball with disability podcast bought to you by Feros Care. And can you please send our best to Madeline? I will. She's at the gym. Listeners can find out more about Madeline and her incredible journey in the links provided in today's episode show notes. Rosanne thank you so much for joining us today. My pleasure and thank you so much for helping spread the message of inclusion.

Thank you for listening. And if you have enjoyed today's episode then make sure you subscribe to the podcast, grow bold with disability and if you like what you heard then please take a few moments to pop over to iTunes and give this podcast a quick rating so we can continue these conversations and encourage people to grow bold.

This podcast is brought to you by Feros Care, a people care organization committed to helping people live bolder lives. We call it growing boldly and for over 25 years Feros has been making it real for both older Australians and those living with disability. To find out more head to Feroscare.com.au