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The first five years are the most wondrous and crucial years of development from the womb we've carefully documented the progress of Dylan Bezencon, a little boy growing up with Down Syndrome.

A inspiring weekly special interest programme for New Zealanders living with disabilities.

Primary Title
  • Attitude
Secondary Title
  • Where are They Now?
Episode Title
  • Dylan - Growing Up With Down Syndrome
Date Broadcast
  • Sunday 2 August 2015
Start Time
  • 08 : 30
Finish Time
  • 09 : 00
Duration
  • 30:00
Series
  • 2015
Episode
  • 16
Channel
  • TV One
Broadcaster
  • Television New Zealand
Programme Description
  • A inspiring weekly special interest programme for New Zealanders living with disabilities.
Episode Description
  • The first five years are the most wondrous and crucial years of development from the womb we've carefully documented the progress of Dylan Bezencon, a little boy growing up with Down Syndrome.
Classification
  • G
Owning Collection
  • Chapman Archive
Broadcast Platform
  • Television
Languages
  • English
Captioning Languages
  • English
Captions
Live Broadcast
  • No
Rights Statement
  • Made for the University of Auckland's educational use as permitted by the Screenrights Licensing Agreement.
Subjects
  • People with disabilities--Attitudes
  • People with disabilities--Interviews
  • Documentary television programs--New Zealand
  • Down syndrome
Genres
  • Biography
  • Community
  • Documentary
  • Interview
Contributors
  • Emma Calveley (Producer)
  • William Toepler (Producer)
  • Robyn Scott-Vincent (Executive Producer)
  • Attitude Pictures (Production Unit)
  • NZ On Air (Funder)
  • Dylan Bezencon (Subject)
  • Jeanine Bezencon (Interviewee)
  • Chris Bezencon (Interviewee)
. UPBEAT PIANO MUSIC Captions by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 MUSIC BUILDS MUSIC QUIETENS UPBEAT GUITAR MUSIC HUBBUB, CHEERING WOMAN: Hit high. Hit it again. COOS: Little boy's turning 5. It's a massive milestone for little Dylan. At one stage, I didn't think we were gonna get this far. Ready? Blow! (LAUGHS) Thank you, each and one of youse for, um, being part of Dylan's special day. It means the world to us. I'm so proud of him turning 5, and it's hard to believe that he's gonna have his school uniform on; he's gonna go to school and be a part of that next phase in his life. So this is just, um, incredible to be here today. (CHUCKLES) Thank you. CLAPPING SQUEALING (LAUGHS) Nice. (CHUCKLES) That five years has actually gone really fast. I remember when I was pregnant, uh, when we just found out that, um, there was something wrong with Dylan, I said to my husband, Chris` I said, 'You know, I see him in the backyard. I actually see him, visually, playing in the backyard.' Oh, it was really weird. I just had this vision. Now he plays in the backyard all the time. (LAUGHS) You know? And it's like, 'Wow. It's so cool.' LIGHT, FLOWING GUITAR MUSIC MUSIC CONTINUES We have the day. Eight weeks to go. Baby Dylan will be here. (LAUGHS) We decided we wanted a third, so it was all very happy and very very exciting time in this family ` another little baby on its way. I went for my 13-week scan. He was looking at the baby, and he took quite a while, and I said to him, 'Are you looking at the nuchal fold?' And then he said, 'Look, I... 'I will talk to you about that later.' Time came to tell me... and my husband, um, 'Something is majorly wrong with your baby.' And the` the earth may as well have opened up and sunk me in, because... it was bad. He says to me, um, 'Your baby looks like it's got trisomy-13 or -18, 'which is not compatible with life. 98% chance of that; '50% chance Down's syndrome.' I was numb, you know? Numb as anything. Uh, probably for about five minutes, I didn't cry. And then the tears just came out and... this, like, reality just hit. It's... It's real. You know, you've got a living baby inside you. As far as I'm concerned, that's that. You know, I think it's one of those situations that either defines us as a family, or it can break us. It's our choice. And it is our choice to take it on a positive light. It is a positive thing. It is. We're having a new boy. I mean, you know, what more could we ask for? OK? When you're in a situation where, you know, you're worrying about a baby and stuff, then this can be really helpful for bonding. There we go. (GASPS) Oh. He looks like... Aw. That's a lovely shot. Who does he look like? Chris. (CHUCKLES) (SNORTS) Is he gonna have more hair than you? LAUGHTER Absolutely. Well, we all live` We all live in hope. What I'm gonna do now is just focus on those measurements to start with, all right? The thing I can see here... BEEP! ...is that, from the right atrium through to the right ventricle. And where these valves come across here, they're all in, kind of, one line, and that's a little clue that tells me in this view that there is an AV canal defect. Can you see this black hole here? Yeah. > And you can see the`? That's the gap. Oh, that's the hole in the heart. Yup. OK. So we can see that quite nicely there. Ah. Sometimes babies with this problem can have one chamber that's small, and that can be problematic; your baby doesn't. The way out of the heart, to the body, into the lungs is normal size, so, you know, everything's pretty much standard in that perspective. That's great. There's a tiny little bit of leakage in one of the heart valves, but it's really minor, and it's nothing more than what we usually see. > What's the picture of there, Paigie? Um, Dylan. Is that his face? Yeah. Is that his nose? Yup. Boy, that's perfect. Dylan's got a problem with his heart, all right? And he's gonna have an operation. And what's wrong with the heart? Um, it's got a hole in it. Good boy. Good boy. That's right. The cardiologist said to me that, um, they stop the heart. And I just,... (CHUCKLES) 'What?' You know. It's all a bit scary to me. I` I have total faith in the surgeons, so that's not a problem, but, still, as a mum, it's really scary. Well, Dylan, this is gonna be your, uh` your room. He might have problems with his speech. Apparently, that's quite a common one. He might not walk till he's 2. I know that that's very common in them as well. But then I hear that they have... If once they get set on a passion, they're incredible at that. Those are the rocker arms. Good boy. And what happens is they've got` We haven't got them in there at the moment, but there's push rods in here. One of the very first things I learned being a parent is you never underestimate the individual's ability ` ever. And that's the first mistake that I think any parent can make. I go that way. That's right. Anticlockwise, eh? Yeah. He may grow up and just not even be remotely interested in cars. But hopefully these are the, um, good footsteps for him learning that he has the confidence to take on anything he wants. So, yeah. POIGNANT MUSIC HEARTBEAT WHOOSHES His heart rate plummeted right down, and they're very concerned about that. Best not wait till Monday. Best to get him out today. POIGNANT PIANO MUSIC MONITORS BEEP SOFT CONVERSATIONS OK. Baby's coming. OK. INDISTINCT CHATTER Is he born? DYLAN CRIES WOMAN: Chris? (CRIES) (CRIES LOUDLY) Hey? Is he cute? He's very gorgeous, hon. Overwhelming. Just takes your... takes your breath and your... your words away and... You're doing well. GENTLE PIANO MUSIC CAMERA BLIPS I'm blown away. He's absolutely beautiful. Basically, they decided, well, there was no point in carrying the risk for an extra three days of term, so they decided to take him out, and I'd say probably within two hours of that decision, he was out. MONITOR BEEPS BEEPING CONTINUES Dylan's stay in the incubator is indefinite, so it could be 48 hours, or it could be a week. I was very anxious before he was born. I just kept saying, 'Oh, I hope he's OK. I hope he's ok. 'I hope this baby's gonna get through this.' And then he came out, and they said, 'Look, don't panic. He's OK. But his heart, it's working harder. 'He's gone into heart failure.' My emotions just... 'Oh my goodness. My little boy.' I just love him so much. He's my baby. Oh, I know. > I just want him to be... all good. EERIE MUSIC POIGNANT MUSIC Little baby Dylan is having his open heart surgery today. It had to be done sooner. So I'm sitting here, anxiously waiting for a phone call. It's just so hard sitting here waiting. This is the little hat he had on just before he came in and went into surgery. POIGNANT MUSIC I cannot tell you the amount of stress that is put on both of us, but... And we handle it differently. I... I tend to go a little bit numb on it with my feelings and emotions on the outside, and them I'm bawling my eyes out on the inside. Um, my wife, she's a lot more, uh, physically emotional. As I've seen in the past as well, she always come out twice as stronger than I. Six months later, it'll catch up and get me. Yeah, it's definitely been a bit of a whirlwind. It feels like I'm having trouble getting my feet on the ground. SOMBRE MUSIC Jean just got the call from the surgery team just to let us know that he's off bypass now. So his heart's doing his own thing. So... such a big, emotional relief for... CRIES: Such a big emotional relief for all of us, especially my wife. So, yeah, it's been... Just feel all that weight coming off. GENTLE PIANO MUSIC Well, I didn't leave Dylan's side pretty much. I lived in the hospital with him. The bond has been incredible between us. I'm bonded to my other children too ` gosh, don't get me wrong ` but there's a different kind of faint happiness in the air just humming over for six weeks. I just hold his hand for hours and hours. KIDS GIGGLE Good morning, Daddy. (CHATTERS, LAUGHS) It's been a strain on Jeanine and myself being apart. And she's had some tough times in the hospital. She's been an island... in herself. She's a brilliant mum, you know, to... POIGNANT PIANO MUSIC MUSIC CONTINUES Hey, baby. Knowing that your little boy has come through the other side is just amazing. I still think, 'Oh my goodness. He's had a total repair of his heart.' COOS: Hi! Hello! He's just a` a miracle little baby as far as we're concerned. He's... He's so precious and gentle, and he's our angel. Aw. (CHUCKLES) You're screwing your little face up. 'Oh, Mummy, I'm hungry.' TENDER PIANO MUSIC MUSIC CONTINUES Mummy's gonna get on with her morning. OK, Mummy'll just get everything ready. OK? I'll get your breakfast ready. OK. Dylan's just like a little normal boy. He just fits into our lives. Good morning, darling. I am so proud of the kids' view on their little brother with having disability. Sometimes he's clean, sometimes he's messy. Yeah. So messy that he just throws his plate off. And we've had some nice artwork on the wall, haven't we? (LAUGHS) Brandon said to me the other day, 'Mum, having a brother with Down's syndrome is just so cool.' That's Dad, and that's Mum, and that's Brandon, and that's me, and that's baby Dylan. (PANTS) He's just started walking. Not` Not full-time walking. But he's probably about 40% walking now. Aw. (LAUGHS) You're just too cheeky. It's all cool, because he's reaching all those milestones. A little bit slower, but he's reaching them. Some lunch. Here you go. Go for it. (BABBLES) Yeah, have those, and then I'll get you something else. When Dylan was first born, he had to have a nasal-gastric tube because he was so weak at feeding. Some children with Down's syndrome have very low muscle tone in their mouths, in their tongue. So they can't handle any types of textured foods and stuff. I did have that fear with Dylan at first. Um... Boy, that fear got taken away real fast! He just eats everything. You've just finished two big sandwiches. (GURGLES) What else would you like? Hmm? Do you want a kiwifruit? Yes? CHRIS: Brrm! Brrm! What's a great car one? Is it just car? Oh, another one? You don't want that one? Chicken. Chicken! Like this. Go like this. I'll show you. You can do that. (CLICKS) (GIGGLES) Do that again. Pig. (SNORTS) Even doing the noise. That's a good one. (GASPS) What's that one? Good boy, Dylan. Horse! Now, this is more about supporting his learning. And so we'll work with you guys and with creche about maybe putting in a teacher aide or work with a paraprofessional, um, who will support Dylan. In the creche? > In the creche. And we want him to have this typical experience at creche and then at school as any other child would do. Just stand up. Good boy. WOMEN LAUGH, CLAP PLAYFUL MUSIC CHILDREN CHATTER Dylan's having interaction with all these other children, which is fantastic. So it's really helping him develop. Um, and,... (CHUCKLES) as you can see, he's really` he really enjoys it. Because he's little, when you compare a child with this ` 2� ` to Dylan, you can really see the difference. When you go to these places, like school and that, he's just so little compared to everyone else, and I just hope that the kiddies just don't push him over and stuff like that. GENTLE GUITAR MUSIC Brandon and Paige. Yep? Are you ready for school? Yeah. Right. OK. Love you. Have fun at kindy. Yeah. Love you. Yeah. Mwah! We will. See ya, Liam. Bye. Say bye! Bye. Have a good` Oh, good boy! Bye! I just can't believe how fast it's gone. These` These last three and a half years have just... gone so fast, you know? And now my little boy's going to kindy. I'm so, 'What?!' (CHUCKLES) I just hope that the kiddies just don't push him over and stuff like that. But I know Dylan's gonna love it, so that's the main thing. So that's really what's driving me. And, well, he's ready for it, in that way, so, you know, um, it's all about what Dylan wants and, you know, Dylan's needs and that. (GRUNTS REPEATEDLY) (GIGGLES) (CHUCKLES) Put your beanie on, cos it is cold out there. (BABBLES) Grab your beanie, please. Do I have to chase you? Do I have to do my normal chasing? (SPEAKS INDISTINCTLY) GENTLE MUSIC Let's go, honey. CAR APPROACHES You all good? Look at me. Darling. You're good? (CHUCKLES) Yeah. Exciting, eh, D? Exciting? Hmm? Yeah? Yup. Cool. Come on, then. Let's go. CHILDREN CHATTER Come on. (LAUGHS, GASPS) Oh, hi! Hi! (LAUGHS) Off away. He doesn't... 'See ya, Mum!' (CHORTLES) Brandon and Paige went here when they were little too. Did you know that? Yeah. FOOTSTEPS FALL (LAUGHS) Oh-ho, this looks messy! (LAUGHS) (BABBLES) Oh, these look cool, Dylan. CHILD CRIES Look at that! So he's just gonna be one of the kids, fit in and... And if he needs a little bit extra care here and there...? Yep. Um, well, my con` My concern is, um, other children pushing him, cos he's so little. That` That's one thing that I'm... Yup. You know? As you can imagine. That can often be a parent's perspective, as, you know, they're with 40 other children here, and they're very very busy... Mm. ...and the rushing. Those things can happen. But, you know, as a teaching team, we talk to all the children about, you know, gentle hands and how we like to look after our friends and, yeah. You gotta be careful around the swings, Dylan. That's one thing that freaks me out is those swings. Just really does... Just don't like that. But the` the sad thing is that because... These other kids here, you say, 'Don't go near the swings, OK, because they're dangerous. You can get very badly hurt.' You tell Dylan that, and he won't comprehend that. He just will not understand that. He'll go back for more and more and more, you know? LOUD SQUEAKING RATTLING, SQUEAKING OK, I'm going over. (LAUGHS) Dylan? Dylan, let's go and do something else now. Come on. Sounds good. Yeah, come on. Ooh! Oh! What about this one here? Hang on. We'll go over here, eh? We'll go and do the wood` wood thing. Come here. Oh. BELL RINGS This is exciting. Come on. BELL RINGS Is Jessica ringing the bell? Watch your step. Watch your step, Dylan. Dylan. Sitting with this thing. INDISTINCT CHATTER Get closer, honey. Be part of the group. Come on. I look at the other children, and they're so much more developed. They're in there running around and talking... really well. And Dylan doesn't have those abilities just yet. And he will get there in his own time, and I know that. But it's just hard seeing it, all these other children being so independent. We have a new friend who is starting kindergarten today, and his name is Dylan. D'you want to all say hi to Dylan? ALL: Hi, Dylan. Hi. Now, Dylan knows where the toilets are, because he's had a look with his mum, and he knows where to put his bag. Is there something else you think you could tell Dylan? Uh, he don't know our names. He doesn't really know your names. So if you see Dylan outside having a play, or inside, you could tell him, um, your name, and you can ask him to play. And that way, he can get to know everyone at kindergarten and make some new friends. FUN GUITAR MUSIC CHILDREN CHATTER He's fitting in so well with the other kids. He's just` What the other kids do, Dylan just picks up and does the same thing. PLAYFUL MUSIC My dream for Dylan... is for him to... just develop a lot more confidence. I need him to have his independence. I want him to be able to just get out there and explore. He's fitting in beautifully. Go, Dylan! CHEERFUL GUITAR MUSIC SOFTLY: You're going to school today, darling. Are you excited? Hey? It's the first day of school! You are a big boy now. Aw. (COOS) I wanna wrap him up and just protect him. When I'm thinking about him going to school, I just get so, 'Oh, where's that gone? Where's that time gone,' you know? And I just wanna have him in my arms and snuggle him and say everything's gonna be just fine. And I'm sure it's all gonna be just fine anyway. It's just me who's being... (GIGGLES) a protective, silly mother. (LAUGHS) (YAWNS) He's still... at the age, I'd say, probably of a 2�-year-old, mentally. Physically, he's probably a 3-year-old. He's very little still. So at school, he's gonna be like this little poppet. At school, he's just so tiny. Whee! We're gonna go brush your hair and your teeth now. What I really would love Dylan to get out of school is his speech thing working and a really good education, just like every other child deserves. Brush your teeth, Dylan. (BABBLES SOFTLY) Aah! (SPEAKS INDISTINCTLY) There you go. Yeah. Good boy! TOOTHBRUSH BUZZES Good boy! Look at you! Guys, it's photo time! Yeah! SQUEALS: Yay! Your first day of school together. Let's get you ready! Come on! OK, Dylan. He's just` Go on. Ready? (GASPS) Yay! That's why, like, his brother and sister are so beneficial to him ` because he's really learning off them. Paige is right in there with him all the time. She really mothers him. And, like, she goes in her room, and she does a lot of drawings and makes him write stuff. First day at school. First day at school. Get in. Get` Oh, OK. Oh! (GRUNTS) Oh! You're getting heavy, son. Oh! Because he's got Down's syndrome,... Mummy. Mummy. ...um, he` he's` Mummy. (BABBLES, GROWLS) ...he's special. He's special, um... like, really special. (BABBLES, HUMS) Yeah, my boy. Yay. Clap your hands. You're excited! School! Yay! > Whoo-hoo! > (GRUNTS) Yes! (GASPS) Look! Come here. Wait for Mum. Him being in a mainstream school is definitely the way to go ` for our family. I want Dylan to have the same education and be in a normal situation as any other child. Come on, darling. Come and sit with all the children. All right, could`? I would like all of you... I need you to say it again because we missed it before. Can you say welcome to Dylan? KIDS: Welcome, Dylan. Cute! Thank you. Dylan's so lucky to have the support around him at school. He's got his teacher in the class, then he's got two teacher aides, who do shifts, and then he's got Natalie, his CCS support lady. As far as educations goes, um, I think for this term, a really amazing thing would be him to learn his name. Uh, you know, write his name. Write his name. I think that would be such an amazing thing for that first term. Even just doing a D. And then next term... Even if it takes a year or so, but that would be an amazing goal to start getting all that sorted out. Um... I think, yeah, reading. I mean, he's not talking. We need to get his speech up as well. Definitely. His speech is definitely needing work. Yeah. Today, I bought the fish... Like, all the other kids are gonna be playing with each other because, you know, they can all speak, and... I am afraid that they're gonna leave him out. That` That is a concern of mine. I don't want him to be the one that's sitting in a corner on his own. He's a very happy, very social kid at home. Yep. Um, but as far as talking, it's... it's, um... So it's about transferring those social skills that he already has, isn't it, into this classroom environment. And again, that's about learning to be at school, about learning to play with the others and, you know` and then to play with Dylan and... Yes. You know, working on those skills. Mm. Yeah. INDISTINCT CHATTER I` I take it home, OK? < Wow! (GIGGLES) Yay! It's beautiful, Dylan. Look at that! He loves doing little... He loves doing little wee circles and stuff. It's very beautiful. COMPUTER: Monday. Tuesday. KIDS: Wednesday. Thursday. I think the first day at school does represent that movement into independence, but every child's journey into independence is going to look very very different. Are you gonna shake your hands for us, Dylan? Can you shake your hands? We put everyone together in school, and they learn from each other, and they` You know, it's` Part of life is knowing that we are not all the same people in little boxes. Every single one of us is different, and I think everyone` for everyone, it's a life skill to acknowledge that and for everyone to learn to get along with everybody else, regardless of whether they're the same as you or different, um, because that is life, and every` every child should have that opportunity. PLAYFUL GUITAR MUSIC ALL CHATTER Na-na-na-na! And then on your nose! JAUNTY MUSIC Whoa! Very good! I'm gonna go now. Can I have some kisses, please? I love you. I love you. (LAUGHS) OK, take that off. I need a cuddle. I'll see you after school, OK? No. It's so awesome that he is now 5 years old and got through all those... hard time of his life. (GUFFAWS) Bye! Chris and I talk about Dylan's future. Sometimes it just takes day by day. But... I think he's gonna be just fine. UPBEAT MUSIC Go, Dylan! (PANTS) Go, Dylan! So cu` Go, Dylan! High five. Yeah. Wow. LIGHT, HAPPY MUSIC MUSIC SLOWS, ENDS See more like this on attitudelive.com. Copyright Able 2015 Attitude was made with funding from...
Subjects
  • People with disabilities--Attitudes
  • People with disabilities--Interviews
  • Documentary television programs--New Zealand
  • Down syndrome