I know that when I am out in the public and I see a child with Down syndrome or some other disability I have a big smile on my face and I think oh you’re lucky but I think other people wouldn’t think that way but I had to go through this experience to change that view point. Like Mariska was tested during the pregnancy but they didn’t pick up on it so we didn’t know until she was born and she was literally, it was a cesarian section, she was literally held up, and I said to Mariska know she’s got a very special look about her, I didn’t even recognise it as Down syndrome. Tipper truck. Tipper truck, yeah good boy. I was afraid about what it would mean to have a child with Down syndrome, I felt that I wasn’t having my own child anymore. Somehow I foolishly thought that he wasn’t going to be like me and like his father and he was was less ours because of that. Woah daddy! Okay hold on hold on hold on. It was all a bit of a whirlwind and happened really suddenly and yeah we just kind of had to roll with it eh? Yeah it was a big shock, went through all the emotions. Yeah but, he came out and he was Lachie and you know. Good boy, sit down on your bottom. Can you find Mickey’s face? Lachie is four. Right from the beginning we had the same expectations around Lachie and his life as we would for any other child. The older he is getting the easier it is parenting him and it’s so exciting to see him develop into this confident little wee guy who has clear likes and clear dislikes. What’s this one? Bath. This is the word. Baaa… Bath He has lots of words, he’s stringing sentences together. Car! Car. He’s using Sign, he’s able to communicate his needs and his wants. Banana And what’s that one? Cow! A cow Cow! The word cow goes Mooo! As long as he’s happy, healthy in progressing and whatever way that’s all that matters to us. Hi daddy! Hello Alexander, how are you? I did make that! You made that? What did you make? Yes! Rice! Rice? That’s fantastic! Are we going to eat some rice? I don’t need to make any now. Hey, how’s it going? Good! How was your day? How was your day? I went to go to a swimming lesson. You had a swimming lesson? Yes! Did you do lots of floating? Kicking Kicking? Awesome I think you only have to look at Alexander when he’s at his best and when he’s really happy and when he’s giggling, he just brings us so much joy and we couldn’t love him any more than than we do. Ready? Steady? Woah that was a big one. The highs are a lot higher because any gains that Alexander has attained have been hard ones. I think if you have a child with a disability you tend to think the smallest milestones as quite a big deal and so you still as a parent feel the same way as those parents who might have what we call a normal child in fact I sometimes think that we have far more empathy for him and his ability to meet them means a big deal than maybe our other children. He’s happiest when he’s working and doing something and he especially likes being a big brother. He sings them a goodnight song, he’s taught him other songs and we’ve told them how proud we are of them that he’s taught them these songs. Kiss for Sienna? Mwah! Alright Yma, shall we get let’s, shall we make a sandwich? You get a knife, big knife. Well Yma is just a girl. Very girly, very caring, loving. Very happy. Besides the girly side, when she needs to she can be very firm and very strict or even bossy. Yeah not a pushover. Her pace is a little bit slower so you need to be patient. The way she can enjoy little things, yeah reminds me then to enjoy little things. Yeah. Why was that thing that I was working on so important, when we can just be here and have a good time with each other that’s that’s the key thing and then the rest is second priority. (laughs) Open. So we’ve been going to the Wellington Early Intervention Trust since he was about nine, maybe nine months. Hi! It’s just been amazing and it’s also given us a whole range of tools to be able to use at home hasn’t it? Yeah what I’ve found really useful the best way is to help him learn, and you know, I’m learning to be a parent myself, but then having to learn the best ways to help him learn as well as been really good. First we’ll have our conversation then we’ve got… penguin penguins perfect! Which one? Perfect choice, thank you. So we have a boy eating a… banana. Who is sitting on the table? It was a little boy. Perfect! High five. Every dollar you put into early intervention you save four dollars later on. Getting in early for kids, certainly from a communication perspective, if you can maximise communication early you can minimise frustration you can minimise behaviour problems later as a result of communication problems. Blue… lips forward, blue Bah let’s get them forward, mmm…. Beautiful work! More? More Better lips forward please, more More Can I help, can I help let’s go more Ma More (Squeals) Mmm lips forward, more. Where’s your more? More Beautiful more. Red. Red ball. We are also in the process of preparing for school transitions so the Wellington Early Intervention Trust facilitates that transition. Woah! And it’s really intense learning and they’re pushed to try new things and if they have sensory issues or they have social anxieties and so on you know there’s a whole range of things that they are negotiating. With children with Down syndrome they often have what we call low muscle tone, they often have an association muscle dyspraxia which is muscle sequencing being able to get the muscles into the right place. I think it’s essential that it’s done at a very, very early age because they can then just build upon what they’ve learned as they move further through life and they’ve got muscle memory is developed at a much earlier age. (lady sings) Alexander can you sit down? Alexander can you sit down, good job. So the first thing that we’re going to do today is say hello. (piano) (singing) Hello to Alexander When Alexander was five he was no longer eligible to go to the early intervention trust so that when it became really important for us to make sure that he had that continuity and still had access to a music therapist to support his development. Alexander is really motivated by singing, playing instruments playing music based games but the goal within that is communication and social skills. So music therapy is using music to develop non musical goals. (singing) Go to sleep, are you sleeping dragon? Yes I am! (singing) Are you sleeping dragon? I am. Weee! (singing) Are you sleeping dragon? No I’m not! Run run run run run! He’s fortunate to have a class of very kind children that do try and involve him obviously the more friends a child has the more comfortable they can feel so that is very difficult when you see the the lovely bonds that children have together playing together and learning from each other and then when you see how much harder it is for your child to interact with others and to approach others it makes me sad for him. We would like him to be independent and be happy and to – that’s the most important thing – and have something that makes his life fulfilling and I think that’s what everybody wants, it just might not be exactly what other people have but he’ll probably achieve that so I think it’s important to make note that he’s not going to be the president or prime minister or whatever but he’ll definitely achieve things that he will be proud of. (school bell rings) Okay let’s hang up our gear. When we looked for her school and we found this great teacher who was able to adjust, adapt their program to make her fit in that’s real inclusiveness. Yma is a very happy joyful person. Fits in quite, you know, naturally into our whanau and room 15, she’s coming more and more out of his shell, sharing her thoughts and she’s just just a pleasure, she’s a bit of a sparkle really into our classroom. So we’re gonna have a game of bring me okay? I know you’ve been working a lot with your numbers and I’m going to see what you can remember. The core principle of Montessori is follow the child, it assumes that the children are inquisitive by nature. You don’t have to force them to learn something you just need to guide their path. Yma what would you like what quantity would you like to get? Would you like to get a thousand cubes? Could you please Yma bring me, how many, three could you bring me three thousand – okay? you’re gonna bring me three thousand cubes. There’s lots of movement in there so they have to hold the number and their head, the quantity that they will have to go and get that’s why we purposefully do the lesson quite far away from the materials so they’re walking backwards and forwards with the material. That age group need lots of repetition to build the memory so we’re always repeating what did I ask you, what did you bring? Oh here she comes, let’s see what she brought us. How much did I ask you to get Yma? Three Three thousand cubes, how many did you bring? How many did you bring? Shall we check? Yeah Let’s count together. One thousand, two thousand, three thousand. You got three thousand! Yeah! What colour is four? Blue. Check again on your pyramid. Gold. She ends up teaching me I think, a lot about life, she’s very easygoing interested in what we’re doing all the time, very social with the other children and I think reading is going to be her passion. I think it’s important for any child to be able to communicate, it’s the main thing with Yma being a struggle because yeah she communicates but other people just don’t understand it. She’s getting as frustrated as well if she can’t get her point across yeah, because she notices that we don’t understand her. What’s going on with your hat right now Yma? Is your hat being naughty? Yeah. Without her communicating well it’d be even harder to get, you know, friends or be able to play with other kids and that’s so important for her she enjoys that. Yma, your hat’s down your face. Down syndrome makes Yma way more different than she would be but as well it does change her a lot but it doesn’t change her being Yma. I get a real kind of hands-on experience of what equity is. The education system is built around tolerance and empathy anyway so yes I think they are aware of the Down syndrome but they know Yma as Yma. She’s not a girl with Down syndrome she’s Yma, she’s a person and she’s a very special person., but yeah she’s got Down syndrome so that means a couple of things but that’s really not so important, that’s not what defines her. Hey cheeky. Mummy has to go to do a little bit of work. Being a single mom is a bit of a juggling act. Combining the work responsibilities with my responsibilities to Lachie and around the home. I’m only just going to do a little bit. Come mama come mama. I work from home and I structured my working hours around Lachie’s kindy hours and I do a bit of work on the weekends and so on just pretty much whenever I can. The fries are coming which – (squealing) Which fries look good? They’re a bit hot. Well he’s quite rigid in has ideas about how things should be done and by whom they should be done and when they should be done. And he likes his ya ya, his grandmother to be sitting down at the table as well. Come here, okay what’s wrong? Do you want ya ya to sit next to you? Yes But she’s not feeding you. Nooo You’re old enough to feed yourself. We just learnt over the years that we needed to try and give him some the stability of a routine and we do things like explain to him in detail what is going to happen the night before something’s different in particular, making sure that that has been explained sometimes even hyped up so that he perceives it as a positive thing. She likes to be in her little world with her dolls and having this, those conversations with them. And sometimes you do hear some words, I mean she can talk but when she’s in her own world she just yeah she makes up words but sometimes you pick up things what she’s talking about. She sort of loses touch with her age group they move on and they’re not interested in Yma anymore and for Yma their games are probably although she finds them very interesting it’s probably too complicated for her to take part in. And kids, you cannot blame them they’re not going to slow down for Yma to keep up with her peer group it’s just it’s just she losing loses touch with them but then she tries to connect with the younger children. At school she knows a lot of people but there are a few who come I have a little play with her. Real friends I think is difficult. Come on good boy, let’s go get your bag to get ready for when dadda comes. In we go. Noooo Put these in your bag. In. That’s it. There’s your dressing gown. (cries) Yeah that’s probably not the best, he’s tired and grumpy. There’s I think a misconception that a lot of relationships break up if their child has a disability and that certainly wasn’t the case with us. So we co-parent I think we’ve worked quite hard to make sure that we keep the communication channels quite open, like we text quite regularly and let each other know what we’re doing and what’s happening and we have you know like a kind of a shared calendar so I’ll upload something into the calendar and that Choppy will the have access to – and vice versa – yeah yes so I think it’s just about… Sort of made that clear from the start when you know we separated. Lachie was the main you know our main focus and number-one priority so yeah it’s just how it’s always been. Yeah it works. From day one and how it’s stayed. Hey Lachie, daddy is going to be here soon. You want to put your rain jacket on? Look it’s so rainy outside. (knock) Who’s that? Dadda! Hello! Hello How’s he been? Yeah good I think as long as he’s in a happy, loving home he’s happy and that’s what he’s got in two places now. So yeah it seems to be working quite well. Yeah. You want to go home? Are you going to daddy’s place? Sweet ready to go? Good boy, give mummy a kiss. Love you! Bye bye! Bye! Cool see ya See ya bye. I am at a stage where I don’t know if I’d want to remove his Down syndrome if I could because I think I’d be removing some very important traits of his. Gimme five, good boy well done. Yeah I don’t think you have to be a superhero to raise a child with disability, you just have to give them the time and the love and they’ll develop quite nicely. Watching. Looking up good boy okay now here it is. I want lunch. – I
– I – Want
– Want – Lunch
– Lunch Good boy, gimme five well done. One of the main concerns is he’s at a higher risk of having a range of health problems and because I naively thought that the heart problem once that had been fixed that we had had our big challenges and then we had more and then more recently Alexander’s had some seizures, you just sometimes wonder what’s next. Where’s Lachie? Where’s four? Good boy! It can be a lot of work but for us this is what our lives have always been so I wouldn’t know any different. Here we are Lachie it’s green. Thursday gonna put that one up. Well done! We have exactly the same aspirations and dreams for him as what other parents do for them for their children that don’t necessarily have a disability and it’s about having a good life it’s about having access to ordinary everyday life experiences and pathways. The children just love him and they interact with him an equal, they don’t treat him as any different but they know he can do the activites that they could do he might just observe a wee bit, and they also know that they’re role models for him. Parents worry about their kids but that’s true for almost any child. We all worry about our children, with Alexander I think that I try to like emphasise on what he’s done and what he’s capable of doing more than ‘what ifs’ because you just don’t know what’s going to happen and you’re not going to enjoy your child if you’re always worrying about them so it’s really important to keep it in perspective and try not to think of the potential problems I think if you want to keep sane anyways. It’s challenging to make sure that each child feels like they’re getting enough attention and enough love as the twins have gotten older Alexander’s bond with them has strengthened, they found things that they have in common and we are very fortunate to have a lot of support particularly from our family. My mother stays the night two nights a week and is here for three days of the week and then my dad and step-mom come two days a week. What color is the grass? Green ah and the red truck and this is the wheel and the wheel is in the muck. My dad is incredibly helpful. You get the reward by seeing a smile on my daughter’s face, somebody has to help her Amalia, otherwise you eventually collapse. We could worry about him less, but we couldn’t love him anymore and we couldn’t enjoy him anymore. We truly feel blessed to have him in our lives. But I understand why people might be afraid to do so – to go through that experience but for us it’s been incredibly rewarding and we feel really strongly that we love him huge amounts probably more than I ever thought I could so – More than we should. Yeah. Yeah she’s really nice, really loving. Yeah. She can get a little bossy at time if we don’t quite do things the way she wants them. She sometimes gets bossy. Yeah. I love her to bits. I think this family would be a lot different without her. I love Yma a bit. A bit? Just this big. Come on. Okay She’s amazing. One, two, three hug! It’s beautiful how they care for each other. For him it’s really a challenge dealing with with a sister who can’t communicate and not communicate that well those are tough calls for a little little boy. If we would have known during the pregnancy yeah in hindsight you wonder had we known that she had Down syndrome would that have explained, would that have predicted the life we have now with Yma? No. So you wonder why you actually need that information, what does it tell you yeah you’re going to have a child with Down syndrome but it doesn’t tell you how life will be and how that person looks, because it’s going to be a person, it’s going to be your your daughter or your son what kind of person it will be. Yay! He’s taught us so much about who we are as people and basically he has given us an insight that we might not have had if he didn’t have his condition. I think we feel you know better people as a result. Having a child changes your life, but he’s just changed a lot more than I could imagine. Yeah just how much I love him.