GROWING BOLD AND AUTISM

One of the most popular and recognised faces on the Australian media landscape; Chloe Maxwell appears to have done it all.

Media personality, TV + radio presenter, model, author, MC, public speaker….the list is long!

In 2004 Chloe stepped into very big stilettos and filled in for Jackie O on the National Hot 30 Countdown on Austereo. Chloe continued working in radio on the Gold Coast and hosted her own show Footballers Wives on SEA FM for several years.

In 2008 Chloe married long-time partner Matt Rogers and their 2 children Phoenix and Max, joined his two older children Jack and Skyla at a star-studded wedding. Together they developed the charity 4 ASD Kids to help under-privileged families fund their children’s therapy for Autism, as Max (Chloe’s own son) was diagnosed with autism spectrum disorder.

In 2010 Chloe was nominated for In Style’s Prestigious Women of Style Awards, for her work with 4 ASD Kids.

Living with Max is Chloe’s first book and details the struggle of raising a child with autism.

Additional links

• Find out more about Chloe’s book “Living with Max”
• Find out more about Chloe and Matt’s Charity 4 ASD KIDS
• Little Souls taking Big Steps
• Understanding Autism

Welcome to the Grow Bold with Disability podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most to help us live bolder, healthier, better connected lives. I’m journalist Pete Timbs and I’m Tristram Peters. I work for disability service directory, Clickability, and am a wheelchair user living with spinal muscular atrophy.

Our guest today is the amazing Chloe Maxwell. Chloe was first discovered at 16 as a model, and went on to become a household name, as a TV personality and, more recently, an author and a radio presenter. But most importantly the mother of Max 13, Phoenix 11 and stepmom to Jack and Skylar.

Life seemed to be going swimmingly for Chloe in 2007. She was planning her wedding to football star Mat Rogers. The couple had moved to the Gold Coast with their two young children, and Matt was the star of the Gold Coast Titans. That was until just after Max turned one, and Chloe noticed that his development wasn’t matching that of his younger sister. And the concerns that Mat had been raising with Chloe seem to be becoming true. And there were many more issues to come with Max.

Chloe, welcome to Grow Bold. Hey, how are you going? We’re doing very well. Now take us back to those early days when you first started to notice that Max wasn’t developing as quickly as Phoenix. Yeah, well, it wasn’t probably me that noticed it as such, Mat, obviously being father to two kids previously knew the milestones that children should hit, and Max was my first born. I guess I was sort of in denial a little bit that he wasn’t hitting the regular milestones. Things such as being able to use different words so that he could speak. And engaging, I guess, looking at people. He just had a lot of different habits. He would stack cans and it was like the lights were on, but no one was home. He never answered to his name. We thought he might have hearing issues, but we then had that checked out. His hearing was fine, but it was having him next to other children his own age and them being able to do certain things that he wasn’t able to do that was probably more of the deciding factor that there was an issue.

Chloe, you mentioned the hearing issues there, what were you thinking at the time? What did you think was wrong? I didn’t know. I just thought he was a little bit slow. And I just figured that, you know, my mom kept telling me that boys are a little bit slower to develop in certain ways. I just listened to her and well, when their children I guess I didn’t want to believe anything.

Did you try and push this under the carpet a little bit? Like you say, you didn’t want to think that anything was wrong? You’re a lovely, beautiful model. Dad is a football star. He had all these ideas of how his son is going to grow up. Was that sort of just like going “This is just a phase. it will go away?” Yeah, pretty much. And no mother ever wants to be told that there’s something wrong with their child. It was my father that picked up on the fact that he could be autistic. And when he told me that he thought that, I pretty much disowned my dad.

I was so angry at him for even suggesting there was something wrong with my child. But it was it was kind of good in a way, because it did set me on a research process. And I did through further research, discover that, yes, there was some issues and that the sooner I could address them, the better it would be for my child moving forward.

Chloe, when you got the diagnosis what was the thought process you were going through? Yeah, I was depressed to be honest. I didn’t want to hear that there was something wrong with him. And I’d read a lot of horror stories on the Internet and the reasoning behind my dad knowing that perhaps it was autism was because he had actually represented Diana Doors, which was quite a famous case of a woman who had actually smothered her autistic child, which was horrendous. I had all these ideas of him just being difficult for the rest of his life and me not being able to help him in any way. I was depressed, and I spent quite a few days in bed just trying to process it all at the time.

What was the actual diagnosis and how old was Max at the time? At the time I think he was just maybe 18 months old, something like that. And it was PDD-NOS, which is I don’t think they diagnose using that term anymore. But that was the diagnosis and the guidance from the experts was that he needed to get early intervention as soon as possible.

What was the next step? The next step was trying to find either a centre-based facility that offered some therapy for him or for him to get therapy at home. And we were lucky enough to meet with an autistic advisor that was organised through the government at a place which was a centre-based facility that offered childcare as well as one on one therapy, four hours a day, five days a week. And we just decided this is where he needed to be.

The problem was that it just cost a lot of money. I think it was somewhere around 40,000 for him to go for the year and, you know, for a two year old prior to school paying that amount of money is just like, we were lucky enough that we had the resources, and probably the only reason we got in straight away was because we could afford to put Maxie into this particular facility. It is called Little Souls Taking Big Steps. It’s here on the Gold Coast in Arundel, but they have similar ones all around Australia. But, yeah, we were lucky enough to get him in there, and we saw such a huge improvement for him very quickly for him being in there. And that’s when we decided that other people needed to be able to access these resources. So we started our charity 4ASD kids, so that we could help other people access that funding.

In terms of Little Souls, Big Steps, can you tell us a little bit more about the sort of things that they did to help you begin this journey? Yes, it’s a childcare facility that has neuro typical children in it, as well as autistic spectrum disorder children so they would all interact at their break time and then the autistic children would be taken into separate rooms. And they would have a one on one therapy session two hours in the morning and then two hours in the afternoon, which focused on certain things that they needed to address socially. Give them some tools as to how to deal with their emotional situations that they’re in. And to help them verbalise as well.

It just depends on the child, because it is such a broad spectrum, depending on what the child’s needs were, they were addressed in these therapy sessions, and they used a style of therapy called ABA Therapy, which is applied behavioural analysis therapy, which used to be quite controversial. But certain methodology back in the day that they used was controversial. I don’t know exactly the details of that, but now it’s basically they just reward children for achieving certain things with cookies and stuff like that. It is stuff that you do with the kids anyway. You did a good job here, scenario cookie. You know, that’s basically what they do, and a lot of it is repetitive. They go over and over again. You know, “What’s your name? My name’s Max. How do you feel today? I feel like this or whatever.” And it’s just things that most people would take for granted that their children just sort of pick up as they are growing, that they have to teach them in these environments.

And how long was Max with these guys? Three years prior to starting school. How was he when he hit primary school? It helped him integrate so much easier than what it would have had he not had that early intervention. He is possibly our most well-behaved child out of all of them to be honest. I wish they all had early intervention. But it really has helped him. It gave him tools to be about to be able to address his emotional issues and yeah, it really helped him a lot. And there are statistics that show that early intervention does help these children so much integrate into normal society. And, yeah, he was definitely very lucky that we were able to get him into this particular program and he benefited and is still flourishing because of that.

How did you find the teachers and the rest of the families at the school? Were they very accepting of Max? Was it difficult for him to go into that environment? Look to start off with it was a bit bumpy, to be honest. He did get a little bit bullied a few times, but he became a bit of a celebrity in the school towards the end there and now he’s gone into High School and the High School is a school that most of the kids have come from the same primary school anyway. All of his peers know who he is and what he’s about, so he didn’t really have to start again going into High School.

But certainly, I think him being at the school and the awareness that my husband and I are very passionate about bringing has helped in a lot of ways because people have been a lot more accepting of him. And he’s been on television, he was on mornings with Larry M and he called him Larry the Lama. He’s been on quite a few different things. He’s been in the paper here a lot, and so it’s really increased the awareness of what autism is and given it a little bit of a face here on the Gold Coast in particular. He is probably the most famous autistic child here. And he loves it.

Chloe, you briefly mentioned the charity that you started with Mat, can you tell us a little bit about that and how it came to be? Our charity is called 4 ASD Kids. We started it because of the gap that we saw in the funding for children in need that had an autistic spectrum disorder and basically just felt pretty passionate about helping others access therapies that they wouldn’t necessarily be able to access because of a financial issue. In 2009 we just started off small, just trying to fund raise and just trying to help other families access the therapy in the particular school that Max was in. And then it’s just grown from there.

Since then, we’ve refurbished a Special Ed unit here on the coast at Burleigh Head State School. We spent $250,000 on that and we have sponsored kids into programmes all across Australia, and we’ve been able to provide resource is to kids in need as well as funds and programmes of our own in certain rural areas. So, yeah, it’s just sort of taken on a life of its own since then. It’s definitely been probably one of the best things that we’ve done. I think, you know, my husband and I have achieved a lot in our different careers. But certainly, when you can do something that helps others it gives you a greater sense of purpose. So what’s the website? It’s 4ASDKids.com.

Obviously, you had two step kids as well, Jack and Skylar. But then Phoenix is 18 months behind Max. How is she growing up with Max? Was she la little bit jealous of the attention that he was getting? How has she been? To be honest, she’s taken on more of a maternal role with him. I mean, ever since she started school, she was always who the teachers would call on if he was having a meltdown. She could come him down. She helped him in the playground and she’s always looked after him. It really has only been last year that she hasn’t had to worry about him because he went to High School and she’s had her own life. She’s been able to focus on herself and she’s really into her sport. She’s just being able to focus on that last year.

This year she is going to a different school because we just wanted to see how they went apart and they’ve both flourished. It’s been really good for her not to have to been relied on so much for him because she really has been taking on a more of a protector and supportive role as a sister. She’s never been jealous. She’s not that sort of a child, it’s been lucky for us.

I hear she’s pretty quick, too. She is quick as the wind. Mat struggles to keep up with her, that’s for sure. This has obviously been going on since Max was two. What have you seen change in the last 10 odd years in people’s attitudes and the amount of assistance and just the way the autism world has changed? I feel like there’s a lot more awareness and a lot more acceptance and inclusivity, which has been great. And obviously with the NDIS coming in there is a lot more support financially, which is also good for those that can access that. And a lot more services as well available, which is also good. Look, I think we can only go onward and upward. And that’s all that’s been happening in the last 10 years.

For other mothers or parents going through the initial stages of having their child initially diagnosed, what would you tell them? What would you tell yourself if you had the chance to go back? That it is not the end of the world. Your child is not dead for lack of a better way of saying it. It’s just that they’re going to need a little bit of extra help, that’s all. And to be honest, he has been the greatest thing that’s happened to us. He entertains us every single day he is the quirkiest, funniest human being on the planet. And it has really been more of a blessing than a burden, which I think as a mother when you have a child with special needs, you often think of all the negatives and the fact that it’s going to be a burden, and it’s going to be difficult, financially and difficult relationally. But to be honest, it has been the biggest blessing, and it has taught us so much about what’s important in life, what’s really important in life. I would just say there is so much hope and just to focus on the positives and the incredible, quirky personality that your child is going to develop into over the years. Because most autistic kids do have just an awesome personality. I love them all. Everyone that I’ve met, I’ve loved. Not met a bad one yet.

What do you see the future holding for Max? What does he want to be? Well, he really wants to be a genetic engineer. But he loves his gardening as well. He’s right into horticulture and grafting seeds. I think he will have a lot to offer in both those areas to be honest. And, you know, I think that’s something that a lot of autistic people have. They’re very good at focusing in on maybe one or two things they become passionate about. Sometimes it’s more than that. They become very good, an expert in these areas. And yeah, that’s sort of where I see him going. I guess either into genetic engineering or horticulture.

That must excite you is as a mother having your child with such clear aspirations. It’s an exciting thing. Oh definitely. It was never something that I foresaw all those years ago. And I think when we got that initial diagnosis, all I could think about the things that he couldn’t do. And, you know, a lot of that was maybe around having a girlfriend or getting married and just super stupid, selfish things that we think of as parents. For Mat it was “is he going to play footy?” He has got no interest in sport whatsoever so that is never going to happen. But he does have such a passion for plants and genetic engineering. So be it, if that’s what he wants to do, and he’s happy than we’re happy for him.

What about interest in girls yet? Well, it’s hard to say. He is a bit too embarrassed to talk about these things. But look, is a good-looking young man and he is six feet tall at age 13. I don’t know how that’s going to work. I’m quite happy for it not to work just yet. I can wait. He loves his Mum, that’s enough. We don’t want him to love anyone else yet.

Now I see that you go and do a lot of talks at hospitals and with a lot of different people and for different charities, including your own. What is some of the stuff that you’re seeing, that is on the horizon for kids with autism and for Max and those sorts of things that we aren’t aware of just yet? Okay, I don’t know that I have an answer to that. I just feel like there is a lot more inclusivity in a lot of things. I mean, they’re doing sensory things. At Marvel stadium, for instance in Melbourne, Joe Ingles and Renee Ingles are on our board for 4 ASD Kids and they organised a sensory room at the stadium there. Being professional sports people like they are and like Mat is – I’m not a professional sports person as you know – but you want your kids to come and watch you do what you do for work, you know. But if you’ve got a child that has sensory issues, this is not the easiest thing.

I’ve seen a few stadiums take this on and put in a sensory room that’s quiet, that has some activities that they could do. They don’t have the loudness of the crowd, but there are windows they can watch the game, for instance, with their parents. And there’s certain things like that that I feel are just phenomenal, that they are being so inclusive. And I know some supermarkets have done some initiatives where they’ve had a sensory free – I don’t know what they call it, not a sensory free day. But they turned the music off dim the lights so that parents that want to go and do shopping with a child that has sensory issues, they could do that without worrying about the child being triggered. So, yes, I think I just feel like there’s a lot of inclusivity and it’s only going to get bigger and better, which is great.

I know that when I am out and about I often get asked questions from people in the public. How do you deal with that, when people ask questions? What do you say in response?

So, yeah, that’s a good question, because I do a lot of our social media, our Facebook pages and what not and I do get a lot of questions that are aimed at dealing with a child with special needs or autism in general. It’s difficult because I’m not a professional. I’m not someone that can advise someone else on the best thing for their child. I guess I have to state that as a bit of a disclaimer. All I am is a mother that it has been through what they’re going through, and I have a child on the spectrum. It’s often difficult to answer questions because I don’t like to give advice on certain things that perhaps an expert should be called on? Generally, I will just direct people to someone that is an expert that can perhaps help them. I may offer some guidance on a few things, but I try not to too much to be honest.

More often than not, all other parents really want to know is “Is it going to be okay? You know, because that is the toughest thing is when you’re facing this diagnosis and you don’t know what the future holds. I guess in a sense, I’m a little bit of a fast forward of the tape that Yes it’s going to be okay, and your child’s going to be OK. They can often be so much of a blessing that you can’t even see it at that point in time.

Well, Chloe, thank you so much. You have been an absolute inspiration. If anyone wants to read more about Chloe, grab a copy of her book “Living with Max”. Thanks so much for joining us Feros Cares Grow Bold with Disability today. Thanks, guys.

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The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.