*inaudible dialogue* So when Maxie was little I always used to say 'Maxie, give me a kiss' and he'd sort of waddle over and give me a little kiss and he'd waddle past and it was
like overnight that changed and I thought 'well that's weird' you
know and this sort of threw a bit of a spanner in the works because I knew that there was something not quite right. Puzzled. Perplexed. We were in denial for a while. But then the reality sort of sinks in. You think, 'Well, that's what it is' And then when you finally hear those words, it's like a punch in the guts. And it just it it sort of just empties you, it's like being emotionally winded is probably the best way I could put it. I knew that nothing was going to be the
same from that point forward. To be very honest it was a bit confusing actually But then slowly we got to know, like, what autism is. So it's been almost a year and a half now after diagnosis so we are in a better position now. When we first found out the diagnosis we felt quite guilty because we suspected it much earlier is this Is this something that I did? Is something that we both did, myself and my wife My perfect world of having a child was
kind of just shattered into something that I really didn't didn't know how
to deal with I didn't understand it That's probably what, I think, got me
surprised I just needed go away and learn a little bit about what they just said to me. I was watching a show on TV and it was about 30 seconds long that I saw. It was about autism. And I turned it off and went to bed And then all of a sudden I sat bolt upright and got onto Wikipedia and Google and that's when I sort of thought, 'Oh' I couldn't focus on anything this this these words kept coming through my head Autism. Autism. What does it mean? What do I do? And I would go to sleep and wake up in the morning and forget
about autism And all of a sudden, it'd come back in my head 'Oh that's right, my child has autism' How am I supposed to be? What am I supposed to do? You immediately go to all the things you don't think he's going to do. So you spend
all this time thinking 'Will he have a girlfriend? Will he get married? Will he drive a car? Will he...?' And what you forget is that tomorrow you still have to do something Just, like, normal. Just like everybody else. You know, when I look back now you could see all of the classic, telltale signs but at the time when you're going through it, you don't really expect that this is something that's going to happen to one of your children. People don't want the diagnosis
just like any other type of condition but it actually, then, allows you to to
start to address the issues and solve the problem. You know, we've got the diagnosis. O kay what do we need to do you know How do we... you know and it's crazy
because Chloe goes into this whole sort of... 'Is he gonna get married?
Is he going to have a girlfriend?' You know, that whole sort of thing. I was just sitting there thinking Is he ever going to be able to play footy? You know I was just...
that was where I was at, you know I didn't think it was the end of the
world I just thought 'Okay, we've got some stuff we've got to deal with here.' And I still remember Nic and I sitting in the front seat of the car Outside, and it was raining and we were just crying our eyes out But I I think, also, it was the
beginning.
It was the beginning, at that moment. We go 'Right, okay' and after
you've had a good cry, got it out of your system You've got to dust yourself off and
go okay let's go for it And essentially, the pediatrician gives
you the diagnosis and that's it. See you later The rest is yours and so it's like you're kind of lost because you don't
know what treatment, therapy Whatever works so you kind of reach for whatever you can to try to find a way to make it work. I get asked this occasionally
and it's embarrassing but I had to google 'autism'. Yeah, you just don't know And here's your plethora of options from lots of statistically proven and referenced right through to the crazy There's a lot of people that want to push their particular therapy Or a particular solution and some of those very well-meaning some of them probably a bit
opportunistic and so you've just got to make sure that you go to a reliable source And you just don't know where to start It's like looking for a needle in a haystack And I think as as parents of a
kid who's got a disability like that you're looking for the silver bullet Oh my goodness we had speech therapy, we had occupational therapy We had this therapy, I mean, we had therapy for ourselves I mean, we had every type of therapy And then we just realized that actually like watch the stuff that works You know, so he really likes visual stimulus so let's use lots and lots of that He loves getting a little bit of feedback let's do more and more of that And we just worked on the stuff that worked and we And we stripped away everything that didn't You know we found the one thing that did
work, it was ABA therapy for Max We've met families at ABA therapy didn't work for So you know you got to find that thing We relied a lot on the internet We had fantastic support from
local area health in the first few months We did get lot of help from the
community as well Like, we did have a few we have a few Facebook groups Who have formed a community with all the children who are on spectrum And also we did get lot of information from them as well Researched, researched, researched On dial-up internet that was crappy And, as it turned out, found the best things that are still available. And we're all sitting on little two-year-old's chairs around this woman and she comes in and she 'I just want to try something' and she went over to Jack and went 'stand up' And, seriously, I don't know whether it was the voice or whatever it is I immediately wanted to stand up, all the parents want me to stand up And Jack stood up. And it was like 'Wow, what's this' I was told very early on that resonated
with me from an old school teacher If everyone's telling you the same thing
that's what works. If everyones telling you something different, do whatever works for your kid. And as we got more clever about how to extract value from the system or from the schools or how to play the game with people we did better. I'd even say today, there's no great plan You have to be on it, a lot, as parents
and that's that's hard bloody work I don't know if that was
conscious or unconscious in the way we navigated it All I remember is in that same meeting, she said 'Well, the only thing I can tell you is that most people who have an autistic child end up getting divorced.'
So that was a great start you're so sitting there going
'Excellent, this is where we're starting from' Every possible conflict trigger in a human's
life is magnified tenfold when you're parenting a child who's got special needs The most impotant person in in your child's development Is your wife, or your partner. From day one she had a fantastic plan It was about independence, friends and support And she would pursue all of that really aggressively I say we, what I really mean is my wife, Bronwyn. Because she's the rock and she's the person that actually enabled everything From all of the organisation once we made a decision She said, 'Right, this is what we need to do in our early intervention' She just went into machine mode You know I often think
what would have been like if she hadn't been there If I'd been a single Dad,
how would I have been able to do that I don't really, to be honest,
think I would have been up to it I don't think I would have had the mental acumen to actually pull it together She stayed at home with two boys, sixteen months apart, one of them was autistic That was a barrel of fun for her. And I got to go to work But at least it was a partnership We figured out we would do that And then we just the tag-teamed everything Definitely team work and she has been
driving everything, my partner She's all over the autism spectrum I am actually just supporting her in
whatever way I can just to make sure that she is okay We've had to work together as a team we've had to compromise we've had to
support each other, be the safety net When one of us powers on for a couple of weeks and then just falls down in a heap The other person is in a position to pick up the ball and keep running Just sitting down and having a
conversation once a day, every night helps, in terms of direction. So just talking to each other is really important. It puts your relationship in sharp focus But it also doesn't give you enough time, sometimes,
to spend time on your relationship You've got to hope it's good enough in the
first place That you'll both be able to forgive each other of that Marriage isn't easy at the best of times Marriage with an autistic child is even harder It just makes it a lot harder, so you've got to invest We're very, very lucky, Wendy and I, that we got struck up the ass with a rainbow That we really fell hard for each other, and we still feel the same way about each other. Because if anything's gonna break up a partnership It's a kid with a disability.
Especially a fair dinkum one. And so I think it's the one that, if your
relationship can survive a decent bout of autism You're going alright A bad days was any day where We were in that period where Alex was quite violent To himself and to other people And I think the bad days were always days when I wasn't there And I heard about it afterwards.
It was my Catholic guilt coming out. He would scream 23 hours, 24 hours a day for the first few months He was angry and frustrated and it was
because we were messing with his world trying to bring him into some sort of pattern that we could then work with, to build upon, to do something I remember going to work some days thinking
'thank God I've got to go to work' I felt guilty for it, but It's normal. You just want to get out of that situation There were absolutely horrible days there were days when you're sitting there and your son's nonverbal. And you can see that he's upset and you can't fix it And you want to fix it. And if there was a way you could, you would. but you just can't But you just can't, and that hurts as a parent There's no one to go to and there were nights where I just cried myself to sleep. There's a lot of them, you'll find this a few of them. But having a sense of humour is a really good thing to have And having somebody to laugh with
really good thing to have. Bedtime used to be, for me, nightmarish And it could be up to one o'clock in the morning And I'd be just tearing my hair out trying to
get Alex to stay in bed And then, once I get him to bed and get him to sleep Then it's sort of like trying to wind down enough, myself, to get to sleep And that went on for quite a while The worst day is when the stars don't align for him and you need to get him to multiple
appointments He could be sick,
he could be in a mood He's hurt himself and you don't know it because he's nonverbal The worst day would be whenever it's a new occasion Like say, suppose, we take Rahi to a birthday party or something birthday party or something
anything like Any special occasions with a lot of crowds
and she's not well prepared beforehand That's when things go worse Pretending that everything was fine for
the sake of other people Everyone was going to a birthday party and you've got to try and make sure that that we all keep it together the behavior, language, everything works that all the social relationships work you keep it all together and go home.
That was exhausting. As most parents will understand, there are birthday parties every two weeks for 15 years And so you just think, 'here we go again'.
You know, put the armour up And let's survive another one Simple things, like going to a shopping center Just trying to deal with a meltdown in a shopping center and then just trying to deal with the social pressures of the stares, and the like and going 'oh, control your child' and so forth And not to judge, particularly children, but not to judge
parents as well when when you see them in those situations because you just don't know what
the issues are that are behind it They're really difficult times for people So, you know, a bit of compassion I think probably goes a long way in those circumstances The worst day. I think the worst day was only about six weeks ago, when he had a massive seizure. He was dead on the bed. But We got him back But that was probably the worst day *interviewer*
You got him back We got him back. We were both there. I remember, distinctly, the first day that he actually engaged with eye contact with me I mean, it seems like such a little thing But we worked for 6 months to get him to do that, via a whole bunch of strategies When you get those wins, yeah, they're the best days As a parent of an autistic child Any, like, little achievement is amazing We were unsure whether it was ever going to talk, so when he started to string some words together and say a sentence, you know, like it was just those moments that were like 'wow' Sleep was a big issue for a long period of time and certainly when a child with autism
finally sleeps through the night I think I think that's big plus I'd never heard my son speak And he said his first word and you're just like, at that point
your universe is nonverbal And then you get a word And then suddenly that universe grows,
you're like 'oh, okay' now this is the world in which we work in
and then you get your next development and keeps going so that was a huge day for us A good day. He sleeps through the night, eats all his
food He's smiling, he's happy, he's playing. I think, probably, one of the best days ever was the first time he had a little friend
come over to play xbox with him we've got a couple little boys in the neighborhood now that come over quite
regularly and play xbox with him and I just love that There's been so many of
those things where you take them for granted but for him they're, like, amazing moments because he knows he's done something that's cool when he realizes that and he projects that then that's when you get those moments you go 'yeah, that's cool' Oh best days would be... I would say a day where the night before where she sleeps well, like at least eight hours, the next day would be the best day He opened a gate for me once, that was pretty special. We worked on it for about four months and he got the gate open and closed still with me giving instructions out there the driver side window but he felt really proud of himself and I was incredibly proud of him So yeah, there's lots of good days. And I'm pretty sure every parent would have these moments but just glimpses of their happiness, and just being able to see Lachlan, in particular, interact with his peers. But there's so many moments with Jack that've just impressed the hell out of me The sheer guts, you know, going to school and I know He didn't know was going on on that school. He didn't really know what he had to do or
anything But the sheer guts of him turning up and going
'okay, I'll do it' Getting a hug, saying dad,
getting a kiss There these are huge days I mean, for me, first day of
school. Just unbelievable. For a parent with a child on the spectrum,
those little wins You just keep them forever How has autism changed me...how has
it changed me... I had no idea about how something that seems so awful happening
to you and your family Can ultimately, not only make you, but make everyone around you just exponentially improve you as a person. You know, I hate to say it, but it's one of the best things that's ever happened to me. You tend to look at people and their behaviours less critically and you're far, far more accepting because you don't know what's going on in their lives and what's going on in their heads Yeah, I used to be, I call it 'The Accumulator', you know It's all about what I can make and get and now it's what I can do and give, basically Really, that's the difference. I'm a much better person. I'm more patient, more understanding. I'm a more thoughtful person, a more reflective person You know, the experience of autism and taking citizenship in the disabled community has enabled me to view life and the role
of career, the role of family In a very different way and so it's I think it's shifted my priorities but also given me a compass that is more meaningful and anchors my life I was much more selfish back then But now it's it's different, in the sense that I can give something back and spend more of my time, be more patient.
Just be more receptive and open to things It makes you think your future changed. Your future definitely changed.
At first you think it's for worse and then you realize no, it's actually going to be okay There's nothing wrong with what's happening,
what's happening around you. I care a lot more about people. I'm far more aware of other people and what they're going through I think that's probably the thing that's changed me. I've grown as a human being, grown as part of society Overcoming. Struggling
Bettering yourself. that makes you a better person So now when I'm faced with a challenge, say at work, it doesn't rattle me. How could, you know, a deadline rattle me? How could an upset customer rattle you? And I can only recommend it because it's the best thing that's happened to my family We're un-embarrassable. We're better people because of Al. The big-ticket items I would suggest are find other parents to talk to because people who've walked the path that you're now stepping on to are the best people to build a relationship and understand what that journey might be and just sharing your uncertainties and
fears with someone who's walked down that path I actually thought it would be just, you know Take him to therapy, he gets fixed.
and then it'll be okay I definitely know that's not true. You can resolve some issues very quickly.
Some are gonna take longer Persevere at it, because getting involved and rejoicing those little baby steps and those little steps as you go along To get the kid what they need to be able to run along in this world The reward that you get out of that is larger than you can ever possibly imagine Gut feeling, I'd say, is really important If we went on our gut feeling, we'd have got an earlier diagnosis and earlier therapy Right at the beginning... I wish someone had helped make the diagnosis earlier I wish I had made the diagnosis earlier So I think don't fear the diagnosis because the diagnosis is something that actually crystallizes things and helps you understand The biggie is to be prepared to travel to find the professional help and that the people that are doing the job properly,
they'll help you Probably the thing that always stuck with me is the advice if you have other kids, this is this is not something that needs to take over No matter how hard that might be because they didn't ask for that either as much as the son or daughter didn't ask to have a disability, or to be autistic or to have a problem with relating other people The other kids didn't ask for it
either so I would say be very conscious of that If you're a dad and you're in this situation and you're sitting there and you don't know what's going on There's only one piece of advice Stay strong. It's not going to be easy and that seems so flippant and so nonchalant 'Oh, thanks mate stay strong what a great piece of advice' 'You should be a motivational speaker' but your family needs it as well I'll tell you, like, meant the best thing I did was I just invested time in my wife, and
Max was the beneficiary of that because she felt like she could slay a dragon You don't know, out of all this, what amazing people you're about to meet. There's a fraternity out there of other parents who are wonderful. And they are the ones who you will value for life. And the first thing that they said to us is 'this is the worst your child will ever be' and that phrase has stuck with me all along because from then on, he has got better It feels at the start like you're just grinding along But then you get your little win, then you get another win. And they just keep coming, and they keep piling up. There was a time with Jack where To get him to say hello was all we wanted It was like 'that'll do'. And then it's suddenly 20 years later And you've got a man and that man is surprising to you because not only can he do those
basic things you wanted him to do He's a mate. And he's fun to hang out with. And he's got his own world going on He's got his own people, his own friends . Definitely. I would definitely say so In the past one and a half years we have seen a lot of progress in our child and definitely once she is growing we are also growing with her and it is definitely getting better and I would say it would be much better I think the deeper in you get, the quicker it gets better because your understanding gets more comprehensive of the situation of that person So you can deal with it in a more appropriate fashion And I think that's the thing that you have to hold on to on the rough days as well, is that you see the progress. I mean the progress might not be as fast as it is in some other children, but you do see the progress and you've got to, you know, hold on to that And it's just a wonderful process being a dad being a father, being able to have someone who is with you all the time a little bit of a shadow. It's amazing and, honestly, even knowing now all the tough bits, even going through those tough periods not knowing the outcome, not knowing
where I'd end up. I wouldn't trade a single bit in the world. I wouldn't swap anything. Where I am now is so incredibly happy. And I certainly do believe it does get a lot better You've just got to, sort of, stick in there. It's a whole different world,I mean I can still see that... the spectrum in there, with Jack, you know There's a side to Jack that's always going to be there but that sort of makes him. That's who he is. And you wouldn't have him any other
way because he brings a perspective to everything That's really quite fantastic And there's a light at the end of the tunnel If you asked me, you know, when
Max was diagnosed , 'how do you feel?' I was so angry. I was bitter, I was
disappointed. But if you ask me now, 'would you change anything?' Man, I wouldn't change a thing, you know. Like it made me a better person, it made my wife a better person, it made our family a better family. It humbled me. It made me understand, you know, what the world's really about. It's about other people, it's about doing stuff for other people, it's about helping other people. And it changed me. Forever. I would say that this is not the end of
the world. And, definitely, there is hope. We are seeing lot of progress with our
child And we are seeing other kids, as well, who are doing really well So, I would say never lose hope Just keep working hard and, definitely, you will make a difference in your child's future. I've seen too many parents now who, you
know, have avoided therapies Purely just out of denial And that's, I think, got a lot to do with our cultural background I think we have to label it, you have to give it a name. It has to have what it is. 'What's wrong with your so?' He's on the spectrum And then that starts the conversation You need colleagues, you need advisors,
you need friends, you need loved ones. And if you can embrace a journey with that micro-community of supporters and colleagues I think it bodes well for a... a healthy family, a healthy person and a stronger journey It's been a privilege. It's been a privilege to go down the track that you go down having someone with a disability in your family I wish that he didn't have autism. but I'm really grateful for the fact that I've got to know Alex for who he is Denial. You always think your kid is fine They'll just cruise through life But it's it's it's not always like that So, acceptance, like you have to accept it And find the appropriate help that you need to get And it comes back to that issue of accepting and understanding the diversity that's there in the community. That there are people that are autistic,
they have a lot to offer the world. And we need to make sure that we we get everything out of those children that they've got to offer Remember this is still your son or your daughter Yeah, there's gonna be challenges. Yeah, there's gonna be a bunch of issues. But do not forget your responsibility. And that sounds all heavy-handed
but what I mean by that is It's gonna be difficult, it's gonna be challenging but You did sign up to be a dad or a mum And it's okay. You can still be that dad or mum You're just gonna have to work at it a little bit harder. And look it's completely okay to show moments of weakness, it's
completely okay to have a bad day. It's completely okay to say 'I just can't today'. But I think if you stick with it,
if you show the love, show the support You'll get the benefits You get a really good radar for autism for a while, and you know there's a lot of it and a lot of us And we function okay. It's just sometimes some people get more than a spoonful Be there for everybody. Step up and after all these years and I've noticed this was a lot of other dads who've been through what you're about to
go through It gets better. it gets so much better than you think it's gonna be and learn from it I'll just say this I would never have thought... I would never have thought in a million years that Max would been the greatest thing that ever happened to me. and he is And when I had a diagnosis and I felt like, you know, life is there gonna be hopeless And look at us now. Is that gonna be the same for everyone? I don't know. I hope so. But there's hope there. It's your kid. and you'll do anything you
can for that kid. No one can share the black humour of
parenting a child with a disability like someone else who's who's got a child
with a disability The first memory was I could remember being in an education lecture where one of the lecturers said 'Oh and there's this thing called autism, but you'll never encounter that.' Yeah, he's a little quirky, but I don't care Because most of the time, 99% of the time,
most people just go 'You've got tall kids' You know the old saying, 'if you've met
one autistic child, you've met one autistic child'. You know, that's it's, like
because every one of them is different Parents with kids on the spectrum,
they're a hearty bunch and you sit there, and you think Not 'Oh, woe is me'. It's 'Okay, how am I gonna climb this mountain'. And, you know. Left foot, right foot. Get going.
