– Article originally from The Generosity Journal Issue Four –
Otis loves hooning around Te Awanga on his bike, hanging out with his buddies and winding up his brother Teddy…pretty standard for an eight-year-old. And that’s the thing right there. Otis has Down syndrome, but since he’s been getting speech-therapy training from four months’ old and his communication skills are stellar, he’s been able to keep up. He’s able to just be Teddy’s bro.
When we connect up on Skype, the Payton household is buzzing with energy, not to mention little people. Mum Asha is juggling the twins Fox and Pepe, aged four, and Teddy, six, all of them fighting for her attention. Otis is next door at Robin’s house, making a cake.
Teddy, smooth as ever, knows we’re here to talk about Otis. When I ask him what it’s like being his brother, he tells me with a dramatic shake of his head that it’s hard. “He’s always getting up in my space. Ah! He’s so annoying.”
But I know Teddy – he’s my second cousin, and notoriously moody. It’s nothing to do with Otis having Down syndrome; he reckons all of his siblings are just as annoying as each other. In fact, he says his sister Pepe is probably the worst…if anything, he thinks the only difference Otis’ Down syndrome makes is that maybe it’s why he’s so good at painting.
Otis has been getting speech-language therapy since he was four months’ old. The training he gets, the Johansson method, is not just about spoken language – it’s also about cognitive development, sentence structure and fine motor skills.
"When we started it back then, it was everything for us. For a parent at that age, it feels really good that already you’re helping and putting the work in for your baby,” explains Asha.
It wasn’t always smooth sailing though. Asha says there were moments when Otis was about four when they thought he would never talk. It looked like they weren’t getting anywhere. Then he suddenly hit a turning point at about five. He started using words and they developed into sentences.
Speaking is harder for him, but he does it. Kids with Downs often have the same size tongue but a smaller mouth, and they may not have the same muscle tone in the mouth to be able to form those harder words and sounds. But since Otis started talking, he rapidly got better and better.
From then on, Otis was pretty much able to keep up with his brothers and sister. Because he’s got that language, they’re all able to play together. He gets to use his imagination out loud, play make believe and pretend to be Shrek – he gets to just be their brother.
When it comes down to it, communication is everything – it’s imperative to Otis’ life, to his involvement in the world, and to his success. Without it, he’ll struggle to socialise and grow with his peers, have a job, or be independent.
Otis’ speech therapist comes along with him to school every second week and works with his teacher aide so Asha knows they’re getting the right information and the right guidance when it comes to caring for Otis.
What that’s meant for his relationships is that he’s able to tell his mum and dad as well as Teddy and the twins what he needs, and they’re able to tell him what they need. He’s able to express himself, and he knows how important it is to listen when someone tries to speak.
When I ask Teddy what it’s been like since Otis started talking, he pipes up, “I like that he doesn’t follow me around so much…he’s stopped that now. And he’s real good at being funny.”
Almost on cue, Otis turns up at the door wearing a hilarious-looking robe. That’s the cool thing about him having the training he’s had – Asha doesn’t need to worry too much. He’s able to be an independent little kid running around the neighbourhood, turning up at his mates’ and having sleepovers, and his mum knows he’s OK.
But the speech therapy he’s had hints at something bigger than all of that too. Asha believes it has the power to transform the way we look at Down syndrome.
“The people with Downs you see out in the community…a lot of them didn’t get the support they needed to make a life work. Maybe they don’t speak very well, have difficulty socialising, don’t have access to the same education. It’s scary for a parent to think their kid might go through that.”
Twenty years ago, speech language therapy practically didn’t exist in New Zealand. So the people with Downs you see in their 30s or early 20s likely never had the opportunities for training that we have now.
But speech-language therapy means we get kids like Otis – a kid who rode his bike at four, who just last Christmas was biscuiting on the back of a boat, who plays fantasy with the twins because he can frame the playtime with language, and a kid who loves school because he’s able to keep up.
What’s happening now with our little kids with Down syndrome is totally transforming what kind of adults they’ll become. If all kids had the training they need, new parents could look out and see a kid like Otis, and they’d hear from a kid like Teddy that it’s really not a big deal. They’d see they can have a kid who’s able to lead a great life – one that’s not so different, maybe just a little bit more colourful.
Words by Reuben Harcourt
Photos by Richard Brimer
UpsideDowns has an ever-growing waitlist of families needing support to enable their children to thrive. You can support them towards a brighter future with a regular donation through One Percent Collective.