My Perfect Family: Melody

Now, I am totally blind. It’s almost a darkness that you can’t explain, because you would have to be buried. It is pitch-black. But in the last five years, there’s been a lot of new coming into our lives. A new diagnosis for my son, which is autism. A new country, a new baby, a new job, and my husband.

A new dog, now a new house. It’s all new, but it’s all… it all feels quite positive. (UPLIFTING MUSIC) Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2021 (BIRDSONG) (COFFEE MACHINE SPLUTTERS) This little indicator will tell me when the water level is near the top. I lost my sight when I fell pregnant with Matthew, my first boy. – Good morning, Mum. – Morning, love. ‘I am a stay-at-home mum.’ I love you. It’s hard work, but I’m thoroughly enjoying it. (CHUCKLES) (SLOW DRAMATIC MUSIC) I had my sight for 27 years. It’s a prosthetic eye, so I’m just getting it ready to put in. ‘When I fell pregnant, just behind my eyes started bleeding, put pressure on my optic nerve. ‘The optic nerve failed.’ They did a preventative surgery, but something went wrong. I was just then completely blind. (DOG WHINES) Matthew was diagnosed with autism when we got here in New Zealand. – (SPEAKS INDISTINCTLY) –

Just give me a minute. You get the toaster out. Put it on the counter where it needs to go. ‘He was at kindergarten when one of the kindergarten teachers came to us and said, ‘Don’t wanna offend you guys, but we think he might be on the autism spectrum.’ You wanna play with the puppies? – Yeah. I just got dizzy. (LIGHT MUSIC) – ‘It was a shock for us, but it explained everything that was… not wrong, ‘but everything that was going on with Matthew.’ Matthew, your toast is ready. – And, Gracie, you can have this. – We still struggle a bit with things like going to the bathroom, getting ourselves dressed. He battles with his utensils to eat — prefers doing everything with his hands. Hey, sweetie. – Hey, Mum. – Can I sit next to you, love? – Yeah. – OK, where are you? – I’m in the middle. – In the middle. ‘He struggles with his short-term memory, which can be very tricky for me. ‘I can’t ask him a lot of questions like where things are, even if he’s the one that moved them.’ – AUTOMATED VOICE: Ready to scan. – I have type 1 diabetes. – Scan complete. 5 millimoles per litre. (INDISTINCT) –

This measures my blood glucose. It’s just a scan on my phone, and then it tells me what my blood sugar reading is. Yeah. – (SPEAKS INDISTINCTLY, CHUCKLES) – I’ve had diabetes for 32 years, and it played a big part in me losing my sight. (LIGHT PIANO MUSIC) – We found out she was pregnant with Matthew probably about five days after we found out that, you know, she’s not gonna see anything again. So it was… It was a rough time. – You need to get your cup. OK. Get your cup, and I’ll get your tablets. ‘It’s mentally tough, because Matthew does need assistance with everything.’ – That’s pineapple. – Before his diagnosis, we thought Matthew wasn’t looking at people’s faces because I didn’t always maintain eye contact being blind. But it was part of… of his autism. (LIGHT, TINKLY MUSIC) # Good morning. Good morning. # How are you today? # Isaac, the second baby, is running me ragged. (CHUCKLES) Yeah. Yeah. (TINKLY MUSIC CONTINUES) ‘I have trouble changing his nappies cos he doesn’t like it, ‘changing his clothes cos he doesn’t like it.’ # The wheels on the bus go round and round. # ‘He is a handful.’ Boom! Boom! – (GIGGLES) – ‘He’s also a baby that loves to laugh, loves to be chased.’

We’re a great little family. # This is the way we brush our teeth, brush our teeth, brush our teeth. # This is the way we brush our teeth all day long. # We’re trying to get him to dress independently. So for every item of clothing he gets right, he gets, like, a jelly bean in his jelly bean jar. He’s becoming more and more independent, but it’s chaos getting him to school. Babe, toddler on the move. – Got your towel. You know where it goes. – You go wait on the couch. I’ll bring your jelly beans and your jelly bean jar. Oh, you don’t have your shoes on yet. – I did check him out. Let’s go, big guy. – And so the blind lady double-checks. (JAUNTY MUSIC) – AUTOMATED VOICE: 8am. – I’ve come to accept that Matthew has challenges, but he is… full of potential. – Check the mailbox, Mum? – You can check the mailbox. Always check the mailbox. ‘He wants connection with people.’ Can you tell me something kind you can do for a friend today at school? It’s always the most important thing — that you be kind, OK, sweetheart? ‘But he struggles.’ – Do the lava part, Mum. – Save us all from the lava! – So, like, if I jump, the lava— the lava just go away. (SOFT MUSIC) – He just started a new school. – Bye, Mum. – Aww. – Don’t be sad. – I’m going to miss you. – I miss you every day, love. You’ll be back soon. You say something kind, you can make a friend. – I love you. – I love you too. – ‘He gets lonely, ‘but it’s not for lack of trying to connect.’ So I grieve for that connection that he so desperately wants to make but struggles with. Yeah. (SNIFFS) * (SLOW PIANO MUSIC) – In South Africa, where we lived, we were isolated for safety reasons. Milky! (GASPS) Milky! Milky! ‘I was already blind. ‘Unfortunately, Danny wasn’t home. He did a lot of travelling for work.’ It was not just, ‘How do you look after a baby?’ but, ‘How do you manage mostly on your own?’ – In South Africa, Melody was kind of thrown into a deep end. Being a new mum was especially rough. (CHUCKLES) Everything was rough. The company I worked for at the time required me to travel overseas, and I would spend about two to three weeks a month away from home. I am a vibration analyst. I did this in South Africa as well. In 2016, I got this job offer, and we came to New Zealand. Melody’s more relaxed. She feels a lot safer in New Zealand. I don’t think I could’ve handled going blind the way she did. Not ‘think.’ I know I couldn’t have handled going blind the way she did. – Hello? Melody? – Yes, hello. Come in. – Melody’s a fighter. She keeps on pushing. – Hiya. How are you doing? – Good. – Terrible day. – (LAUGHS) It’s not great. – No. – No. – So what I’m gonna show you is upper and lower body protection, OK? So with your right hand — I’ll just take your hand. Is that OK? – Yep. – And I’m just gonna put it on your forehead. And what we’re going to do is just take it out about 18 inches, OK? – Yep, got it. – And with your other hand, put that on your tummy, and then we bring it out, OK? – Right. Yep. – So let’s cross an open space. You happy to do that? OK? – Yeah. – I’m gonna get out the road, and you find the door. OK? – This is still a new house, so I’m still getting used to it. – Excellent. Great. So we’re gonna show you some trailing now. With trailing, what we do is — if you put your hand out like that, and just keep your fingers all nice and curled in. So if you come into contact with something, like door stanchions and things like that, it’s not gonna hurt. We’re gonna map this area until we’ve mentally mapped the whole thing. Very, very close, very, very slowly. – OK. You’ve essentially made me a knuckle-dragger. – (CHUCKLES) – When I went blind, I had to learn how to walk again. I had to learn to rebalance myself. I had to learn how to do the simplest things. – Excellent. And you know what that is? – Fridge. – Excellent. Right, OK. And find where the edge of the bench is. – My goal, I think, always will be and always has been to have happy children — happy, healthy children. – Excellent. Right, somebody’s knocking, and we’ve gotta go and answer the door. That’s it. And on you go. – I genuinely don’t see how I would manage without the support that we get from the systems here in New Zealand. I know everybody survives; I know they make it. But there is a huge difference between surviving and having… having a life. – That is quite a long, free walk that you did, you know? You’re doing amazingly well. – Yeah. I truly believe in my heart of hearts that… we are in the right place,… especially for Matthew. (CHILDREN CHATTER) Since being here, I know how much support Matthew gets. He is in a wonderful school. He has people at the school to support him. He is thriving. (UPLIFTING MUSIC) – No, go easy! (PANTS) – Tag! – Can you please go easy on me? – Matthew loves people. He loves hanging around with kids of his own age. – You try to tag me first. – Oh, I need to tag you. – The problem is he’s very bad at picking up on social cues. So that is something that we are working on. – (MATTHEW YELLS) – I was quite concerned with moving to a new school. The first day after school, I picked him up, and he said, ‘Dad, I made so many new friends today.’ – Be careful of the ball, Mum. – The ball? – Yeah. – OK, we’re gonna do Grace’s exercises, sweetheart. Gracie! (KISSES) Gracie! This is Gracie. And she has some nerve damage in her back legs. And she needs physio about four times a day. And the vet said she doesn’t know. It’s not structural. She still has feeling. It could be a nerve disorder in her back legs. But that’s about as much as we know. We got Gracie for Matthew. Are you holding the ball in front of her nose, buddy? – I am. – ‘Gracie is Matthew’s best friend. ‘He’s being mindful, which is not something that comes naturally to Matthew.’ – (CHUCKLES) Come on, Gracie. – ‘He’s remembering that she needs to be fed and needs to be watered.’ – Those are the puppies. – He even realises when she’s sleeping. – She’s lovely, and a bit scratchy sometimes, and a bit sleepy. – What did you do that was kind today? – I had… I made some new friends. – You made some new friends?! – Yeah. – And were you nice to them? – Yeah. – OK. And did you have a good time? – Yeah. – Oh, Matthew, I’m proud of you, buddy. * – So we’re gonna get Amber, and we’re gonna put her in the stall and milk her. (COW MOOS) Yeah, hang on, Amber. – Matthew started at Teacher in the Paddock. – Maybe do it two-handed. – Cos you need your two hands for milking, don’t you? – As difficult as he finds people, he’s really amazing with animals. – And look, Jamie’s been coming to say hello lately as well, because she’s loving to eat all the grass that’s behind Amber. – Teacher in the Paddock has just been… a dream come true. – Gonna put this one on so you don’t get a wet bottom, eh, Matthew? – Yeah. – First of all, we gotta wash her, don’t we? – Yeah. – We wash her first. – Matthew loves being indoors, but going to Teacher in the Paddock — that’s the one outdoor activity that we know is not gonna be an issue with him. – You’re gonna sit on the stool, and Kevin will sit on the bucket of water. – He loves milking the cows. Most kids, when they go, they start milking one-handed. He’s graduated to milking two-handed. He’s really proud of himself because of that. – Nice and warm? – Yeah. – Nice to do this on a cold day, isn’t it? – Yeah. – Just that sense of achievement. – That’s one place where Matthew thrives. – Matthew. So, Alfie over here, the little… – Alfie? – Mm-hm. – And he’s a little bull. Mum and Dad and the baby. – Let’s get the egg out, Matthew. How does it feel? – Warm. Guys, this is Rupert. – And what is Rupert, Matthew? – The rooster. (UPBEAT COUNTRY MUSIC) – Jade’s going to take some baby chickens home. – Can I take some, then? – Have a talk with Mum and Dad about it. – This is a snack from South Africa. And this is gonna hang… for three to four days. Even longer if we want it drier. – How about 100 days? – 100 days. That might still be a bit too long, buddy. – How about 10? – Matthew calls his dad ‘best buddy.’ Best buddy, best buddy. – You can take this… – Mm-hm. – Lift it up, over, down. – Danny does struggle with Matthew’s roller coaster of emotions,… – No. Use— Hang it on that side now. – …and does say to me sometimes, ‘I’m struggling to deal with it.’ – Excellent. (CHUCKLES) We butt heads probably more often than not, because we’re quite similar — both very set in our ways. – You were my parents first, right? – (CHUCKLES) Yeah, we were your parents before we were Isaac’s parents. ‘Sometimes I need to step back and realise I can’t think for him ‘and say, “We’re doing this because it’s easier. It’s quicker.”‘ He needs to figure that out for himself. – Too tall. – It’s challenging. It’s never boring, but it is challenging. I will just get used to him stimming, and he will then change it up on you. ‘Oh, he’s not shrugging his shoulders any more now; he’s grinding his teeth.’ Or, ‘He’s not flapping any more; he’s pacing in circles.’ So you’ll just get settled into one pattern of behaviour, and he’ll change it up on you. Sometimes it takes a little while to figure out what’s going on. (ETHEREAL MUSIC) Matthew now has access to a life that we didn’t have in South Africa. I struggle being a South African in a safe place, and New Zealand is a safe place. This is… (SNIFFS) That’s rosemary. Good job. OK, now just be very careful. ‘I suffered some trauma in South Africa ‘that still makes me feel unsafe if I am not sure what’s going on around me.’ So let’s get lots, buddy. The first place we lived in in New Zealand was like all places in New Zealand. There were no bars on the windows. There was no electric fencing. There were no security gates. There was just a glass door to the outside world. I didn’t sleep for months because… how do you feel safe when the world can just wander into your garden, come into your house? ‘But people are safe here.’ Isaac! (GASPS) I can hear you splashing! ‘The big difference in coming to New Zealand ‘is Isaac has spent his childhood outdoors. ‘Under the sun, in the grass. ‘He spends it walking with me, ‘even when I’m by myself.’ I have started to feel at home because I think you feel at home where your kids thrive, and my kids are thriving. (ETHEREAL MUSIC) When I think about when we met and how our lives are different, it’s… it’s like… it’s not even the same book, you know what I mean? It’s like being in, like, a different planet. We met in a bar. It’s not exactly a romantic story. (LAUGHS) I pinched your bottom. (LAUGHS) – Yeah, well, it was a good bottom. (LAUGHS) – It still is. – (CHUCKLES) I went through some photos from… – When we met. – Yeah. – And you asked me to be your girlfriend. – I didn’t use those words. Yeah. (LAUGHS) – Because I remember meeting you and going, ‘Tattoos everywhere, punk shirt — this is gonna be fun.’ And then it was like, ‘I’m gonna have to marry him, because he’s so smart. He’s so funny.’ I love you, babe. – I love you too. – Hmm. – Wouldn’t do this with anybody else. – I would — somebody with more money. (LAUGHS) – Yeah. Can I just be a part of that, at least? More money always helps. – I love you. I would never— I couldn’t do it with anybody else. – I’m gonna go into the water with Matthew, OK? – OK, I’ll stay here. – Just up to our knees. No deeper than our knees, OK? ‘Melody has done amazing.’ – Look, look, look. (GASPS) – Fun? Is he fun? – Ah! Shit, shit, shit, shit. – (LAUGHS) ‘I couldn’t do what she’s done.’ I’m really proud of Melody. (LIGHT GUITAR MUSIC) – ‘I would love to see my boys smiling. ‘I went blind so soon.’ (EXHALES) Matthew was born just a few months later. If I’d just held on to it for a few months, I would get to see him. I think that’s what I grieve the most. (LIGHT GUITAR MUSIC CONTINUES) I am super proud of my family. It is so difficult, and yet we are… a happy family. (MUSIC FADES) (LIGHT GUITAR MUSIC) Captions by Jessie Puru. Edited by Steffi Dryden. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2021

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