When Josh Bradley was a baby, his Mum’s coffee group turned into something bigger – a charitable trust that today funds the speech therapy needs of nearly 300 children with Down syndrome across Aotearoa. Josh was there from the very beginning in 2003, and remained a member until 2017. Following his TV stardom on Down for Love, his Mum, Nic, spoke to me about their journey.

Right from the first episode of Down for Love, Josh Bradley and his whānau strike you with their infectious smiles, sense of humour, and easy rapport. Speaking with Nic and later Josh over zoom was exactly the same. It was such a joy getting to know this family a little more, and to hear about some of the origins of UpsideDowns.

Nic was a new Mum in winter 2000 when she first met Jo Adamson, a second-time Mum who’d also just had a new arrival with Down syndrome. Josh was Nic’s first child, and she was glad of a friend who had a bit of extra parenting experience, but whose child with Down syndrome was the same age as Josh.

“She had her third and I had my second at the same time as well, so it all just worked, it was really good. It was lovely for the kids and it was great support,” says Nic.

Jacob (left) and Josh (right) the first day they met.

Together, they began to realise the strengths and weaknesses of public support when it came to their children with Down syndrome.

“We both did sign language – Makaton – and we both found there was no back up to that.”

I asked Nic about the role of Makaton in those early years for Josh.

“Huge, absolutely huge. And so beneficial. I would highly recommend it to any of your new members, get them straight onto it, because it just means that the kids don’t get frustrated. And our kids get frustrated a lot - and who can blame them, when you can’t actually get what you want or what you need or get across how you’re feeling – it’s just a basic human need really, eh? And to be able to do it so young, to say that you’re thirsty or you’re hungry or you need a hug… it gives you warm fuzzies!”

However, this was something they’d taken on themselves, and there wasn’t much available to develop Josh’s speech beyond what Makaton could provide.

“The public speech therapy was so hit and miss and so few and far between, and we just needed to do something else. Neither of us were oozing money, but we went private.”

Unfortunately, Nic’s experience of public speech therapy is strikingly similar to the stories we hear at UpsideDowns in 2022, over two decades later. The graph below shows the results of a 2020 University of Auckland study that demonstrate the gap between what is provided and what families need, many spending thousands of their own limited funds each year to access them.

For Nic and Jo, there was no UpsideDowns, no way to support their choice to provide this intervention for their children.

“We had a speech therapist through the Government but I kind of felt that she’d just come and play with him. And I was sitting there and I got really frustrated. These are really spongy years and I need to get as much crammed in there as I possibly could. So that’s why we went looking for someone else to do it. And then we found Sarah [Goodall] and saw what she was doing and how she was doing it and the results she was getting… we totally just ran with it and then of course the pocket kind of went – eurgh! Help me!”

Nic and Jo were meeting up with another parent, Hannah Blow, when the idea for what become UpsideDowns began to form.

“We were just sitting round having a coffee one day saying this is ridiculous, none of us could afford it [speech therapy], it was some hideous amount of money that we were paying on a very regular basis for our kids, but there was no way we wanted to stop it either, so that’s what got us thinking there must be a better way and…started the Trust! It’s so cool to know that it’s still going and that it’s still helping families, it’s so good. Because it’s something that’s really needed in New Zealand.”

I asked Nic why it was speech therapy in particular that the trio isolated as the need they wanted to support.

“I can’t speak for the other two, but for me personally, because Josh was our first – he was just him. We did everything mainstream. I mean, yes we did the Down syndrome coffee groups and all that sort of stuff but we did everything mainstream – he grew up against his peers.”

The only thing the Bradleys found to be really lacking for Josh was speech; “the sign language actually put him above those other kids for a time and he was talking before others and telling me he needed to do this and all that sort of stuff and they actually picked up sign because of him. But when the gap started going the other way and the kids started talking and Josh wasn’t – or he was trying and words weren’t coming out right – that’s when I went, ok something needs to be done about this.”

Josh also had club feet, but when it came to the physical side of things, Nic found that public support was well-provided.

“it was the cognitive stuff that we weren’t getting from them. All the physical stuff, and the health stuff we didn’t have any problems with, that was all fine. It was the cognitive that we just weren’t getting. And that’s what’s so, so needed for these kids. Communication is their biggest challenge (in my view). Communication for them is such an important part of becoming a valid member of society – why are they not putting in the resources?? Ropes me, eh? It makes me so angry!”

Thanks to the group’s efforts, however, UpsideDowns is now providing 292 families with support to access regular, individualised speech therapy for their children with Down syndrome, even if, unfortunately, the public picture hasn’t changed all that much.

“It was such a really busy thing to set up but really rewarding as well, and we had a lot of fun, we had some really awesome people that came on board and had the most amazing ideas and brought some really cool stuff to the table. Mel Watson who was epic and got the whole Share the Dream thing started and that was really fun and we had lots of fun with that.”

Nic found that through her work with UpsideDowns, which began life as the Auckland Down Syndrome Education Trust (ADSET), all kinds of new connections took place.

“John Gilles and his daughter Karen… they were so helpful and I literally roped John in because I used to work with him and had such a good rapport with him at work. And he doesn’t have any connection whatsoever to Down syndrome – he literally had a work connection to me, and yes we had good banter but that was it, and that’s how we got Karen on board as well. I just love people like that. They’ve got no connection to it, no reason to do it other than that they’re just nice people. And I think that’s one thing that having Josh and getting out there and doing all these weird and bizarre things that you’d never do if you didn’t have a Josh, you meet some awesome people, you really do. It actually restores your faith in humanity.”

At these early stages, the Trust was supporting around 10 Auckland families, including Josh. By the time Nic started to become less involved with the running of UpsideDowns, there were around 100 children from other parts of New Zealand too, as well as Auckland.

Josh remained a member and accessing speech therapy through the Trust until his last year at school in 2017, when the family and Josh decided to step back.

“He got sick of speech therapy. He got to that age and he was just done with going and I said, well, as soon as you talk properly, we can stop! That helped! I think Alison [Owen, Josh’s therapist from 2013 onwards] and I decided, both of us, that it wasn’t going any further… in his brain he was done. And he’s his own person. My other two kids, they get to decide and if it’s something like that then it’s kind of their decision. We pushed him in two things and one of them was speech therapy, I definitely pushed him in speech therapy a lot longer than what he wanted to go, and the other one is swimming because they all need their fitness and he’s got bad knees and feet and swimming is good. So that’s the only two things we ever pushed him into, and the rest of it if he doesn’t want to do it then he doesn’t have to do it… And every now and again I have to say to him, slow down, say that again. And I’ve threatened – ‘do we have to go back and see Alison?’ – ‘No!!’ So, he knows. Most of it’s pure laziness really.”

Josh has always been ‘one of the boys’ as Nic describes it, and in keeping with this, he decided to leave school along with his peers at the age of 18. He did a year at Manukau Institute of Technology, which Nic found to be beneficial mostly for the associated skills than the course itself. Things like taking public transport and venturing into a more independent world. After that, Josh was keen for a job, and Spectrum Care stepped in to great effect.

“We used Spectrum Care for transition out of education and Carlijni was the best person I have ever met, she was just incredible, and she sat Josh down and said what do you want to do? And he listed all of these places he wanted to work and she said, right, give me a priority order, and he did. And top of the list was Rainbow’s End and she went off and got him an interview! It was all Josh-led. Carlijni dealt mainly with Josh, asked him the questions, spoke with him about the interview. He got the job and he’s been there ever since. Really cool company. I could not rave about Rainbow’s End enough.”

Nic described how they brought her in for a discussion about how they could best support Josh in the wake of all the COVID-19 disruptions, and how she asked for an extra hour or two. They responded with an extra day and two extra hours on each of his existing days. “Now he works 3 days a week, 5 hours a day. They are just amazing.”

When Josh joined us having returned home from the gym, I asked him what he liked about working at Rainbow’s End.

“The money!” was his reply. “I do enjoy my workmates,” he later added, and agreed that it was fun working with kids in a place he had enjoyed when he was a child himself.

When I asked if speech therapy had been any fun, his response was a little less enthusiastic.

“Oh yeah, sometimes fun, a little bit so-so. Sometimes it wasn’t. Yeah, it was hard, thinking in my head.”

I asked if the effort had been worth it and he didn’t hesitate to agree.

“Yep. I talk to my friends all the time. Friends, girlfriends…”

This brought us on to the subject of Down for Love, and Josh’s new-found fame.

“It was a different experience!” Nic says of filming, “Josh loved it, absolutely loved it, and loving it now – loving the attention, wants to give everyone his autograph! We had a little family gathering every Monday night to watch the show – Oh my God, the first episode we were just rolling on the floor laughing and it was so funny. And his one-liners, we were just like, oh my God Josh! – ‘Hang out. Make out!’”

Josh had a great time, but Nic struggled at times with the filming process.

“Talking about Josh’s birth and stuff that was hard. So hard. And that’s hard for any of us I think. That was a really raw, emotional time, and to stick a camera in your face and get you to talk about that… whoa!”

When I asked Josh about the challenges, he said that talking and thinking of questions to ask his dates had been difficult. His favourite part was the wine-tasting.

But Nic has been happy with the result and the experiences Josh has gained as a result.

“He had a lot of fun meeting all the people and it’s ended up with the desired result at this stage. It was good and, again, it’s entirely up to him. I saw it advertised…he’s had a girlfriend before, so he was looking for a girlfriend. I had explored all avenues, I had gone to IHC, he’s on Tinder – there’s a lady in Auckland that was trying to set up a dating website for kids with disabilities, but her family was having medical issues and it just didn’t eventuate. There’s one in Hamilton I think, I tried them, like I tried a lot. And then this popped up and I just said, this is what it’s all about, do you want to do it, and he said ‘hell yeah’. So he jumped full force in. So it’s all up to him whether he wants to continue.”

22 years into her parenting journey, Nic can look back with great pride and satisfaction at what she and the other UpsideDowns’ founders have achieved and are continuing to achieve, as well as at the young people her children have become. It’s not every coffee group that turns into a national charity! She’s learned a lot and gained some tremendous experiences as a result of ‘having a Josh’. Her parting words of wisdom are valuable for any parent.

“Let them be who they are. Even if they’re acting weird or doing something different. I look at some kids with their parents these days - not just kids with Down syndrome - and they try and stop their kids from being weird or annoying or whatever. And you can’t with these fellas. That just squashes them. Just let them be and they’ll come into their own.”

Any viewer of Down for Love can see that Josh has well and truly come into his own: a confident, funny, exuberant young man with a job he loves, a girlfriend, friends, and workmates to talk to and have fun with, and a close family with him all the way.

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