Episode 6 – Dad Talking Dads

Speaker 1: Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters Dr. Lisa Interligi and Kristine Christopoulos and their guests in sharing experiences, information and support ideas to help children with disabilities flourish.

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Kristine Christ…: Hello and welcome to Loop Me In. Today we have Rob Hale from Dad-ability. Rob shares a podcast with dads and having a child with a disability and we couldn’t wait to speak to him today. So listen in. Welcome Rob.

Rob Hale: Thanks very much. Thanks for having me.

Kristine Christ…: Pleasure. We were really excited to have you on because it’s great to have a dad’s perspective of raising a child with a disability. And you have your son, Leo, who you mentioned before.

Rob Hale: Yes, I do.

Kristine Christ…: Seven years old.

Rob Hale: He’s almost seven and he’s ASD-3. He’s nonverbal. He has a moderate intellectual disability as well, and ADHD. So he’s got a bit of an alphabet going after his name.

Dr. Lisa Interl…: That’s right. We’ve had the similar sort of journey, although our kids are way older than yours. Our two sons, Louis is on the spectrum and has a intellectual disability as well. So completely understand how challenging your life is.

Rob Hale: Thanks Lisa. I don’t know, how would I describe it. It’s been challenging, but at the same time I’m a far better person in every way four and a half, almost five years into the immersion, into disability. It’s been quite interesting to see. I’ve probably grown more than I thought I would. But as you said, it’s not without the challenges. There’s a few battle scars that are now make me tougher than I was. There’s lots of ups and lots of downs and everything in between. And I think as a dad, we go on, probably a, I don’t know, slightly different journey to maybe what the mums go on. And I’d say probably a slightly more isolated journey than what the mums go on. And that was what I was sharing with Kris the other day. It was interesting for me to see, I was struggling for so long to connect with other dads like me that would get it.

And I just wanted someone who gets it, who get gets this. I believe my friends couldn’t because they don’t understand. They had neuro typical kids. I believe my parents, my family, no one really was going through it. So in my mind, I shut them off as people that just won’t get it. They don’t want to listen. If I say my

challenges, they’ll probably say something stupid in response and tell me, “It’ll be okay.” And I just thought, “I don’t need that.” So I was desperate to try and find like-minded dads, and I found it really, really, really hard. And it’s still hard to this day. Not many people feel comfortable talking about it and sharing it and discussing it. And there’s various reasons for that. But even when my son got accepted into St. Lucy’s, which is a fantastic school, and I thought, “Oh, this is going to be perfect, amazing, class full of dads to talk to.”

And I was the only dad on the parents chat. I thought, what is going on? I found it really quite hard to connect to dads. And I suppose that was why one of the major reasons for starting my podcast in the first place, but it’s just I think I want to do more to help the dads. And I’ve realized that since starting it and a few conversations later, that I’m also talking to mums as much as I’m talking to dads, because sometimes the mums are listening to try help dads and hubbies and partners try and understand better as well, because they can see that they might be struggling and isolated and not talking to people about it. So it’s an interesting path I think that the dads go on. A lot of pride that you have to just remove.

A lot of armor you have to take off. A lot of vulnerability you have to have, and it’s not comfortable for a lot of dads. And I certainly have found that, and I would regard myself as someone who’s comfortable talking about the emotions, but yet it still has a degree of uncomfortableness to it. And I’ve also noticed, particularly in the workplace, there’s a lot of dads masking a normal ordinary life, which is very interesting. And it almost feels like the more corporate, executive, senior multinational company you’re in, the more you mask it and then just pretend it, because it could be seen as a weakness in your job. So it’s a fascinating, I suppose, insight into myself. I’ve had my own experience. I’m now, thankfully I think, in an environment that fully understands and accepts it, but I wasn’t, and I’ve had to go through that as well. So it’s interesting. Really interesting.

Dr. Lisa Interl…: Isn’t that just how blokes relate to each other. I worked in construction and mining for many years in a very male dominated work environment. And my experience was that, particularly in managing performance, blokes will ignore poor performance until it really, they get to breaking point and then they’ll scream at whoever and then they’ll go back to ignoring it. It’s like this kind of bipolar response to performance, they get to breaking point before they have to actually let it out. And I wonder if it’s the same in your experience in this situation.

Rob Hale: Yes, it’s actually my personal experience. So what you’re referring to, and I don’t mind sharing it because it’s helpful context, I think, for all the listeners. You mentioned the word breaking point. I think, yes, to answer your question simply, it is, I think, quite a typical male response by default. And I think that comes for myself, you came from a life of growing up thinking that if you are hard on yourself, you can reach more, achieve more. It worked for me in a

sporting world. It worked for me in a professional world. It worked throughout my studies. And so a degree of pride, but a degree of, well, hard work will solve it and I’ll be better and I can achieve more. And you put that expectation on top of a dad and a dad of a disability no less. And what the natural feelings you have as a dad to want to be your best anyway for your kids.

And it just creates a pressure and an expectation that is far too unrealistic. And it does take you to a, well, took me to a breaking point. And that was my big, I suppose, drop in the rollercoaster ride because I literally was absorbing everything and I felt I was learning what I could, applying what I could. And I was that dad, I wasn’t on the sidelines. I was certainly invested and involved and active in my son’s therapies and all that stuff. I was doing what I thought was the right thing and good and in the way that I would normally handle everything else in my life. And I became like that, I can’t think of a better analogy, maybe you guys have one, but the frog in the boiling water, it was boiling around me, and I didn’t fully see it myself. And it was coming out through irritability, through quick temper, through not patience, through me personalizing every interaction.

If Leo wasn’t having a good day or a bad behavior, I made it about me to say, “Well, I’m doing something wrong and I’m not good enough and I can’t believe this is happening to me.” And I started having resentment and victim mentality and just became this really bad vicious cycle of a lot of rumination, a lot of overthinking it, a lot of talking about it and beating myself up. And I just couldn’t get out of that loop. I didn’t know what it was formally called. I found out from having to go to a mental health hospital that it was called adjustment disorder with depressed mood. Adjustment disorder was an interesting one. I’ve never heard of it, but it was described to me by the psychiatrist as the everyday equivalent of PTSD. So PTSD is a informatic event that creates that kind of a response.

And adjustment disorder is your inability to cope with the everyday stresses and trauma and you just can’t rationalize it properly. And so I was strongly encouraged, I’d say is the right polite way to say it, by my wife. And I don’t mind sharing this. I have to be careful how I share it because I want to be very respectful to her because she did an amazing job. Without her, I don’t know where I’d be. And she had the courage, bless her, to actually confront me and tell me that in one of my many sobbing emotional spiral moments where I was completely unhelpful to the family and in many ways just a very negative energy. And she goes, “You need to get out of here to get help.” I said, “I don’t know, that’s not realistic,” in my head. And I went say too, “Well, you need me here. I need to be part of this. How you going to do it on your own?”

That’s where my head went to. And even I knew I wasn’t great and a big help, but I thought I would still be needed. And it was literally that… She said, “We will cope better if you are not here right now.” And that’s all I needed to hear. That was so confronting and a massive reality check. And I just completely broke down. Breaking point. And for her to say that I thought, “Wow, I know how hard it is to do this on your own and I’m that much of an issue right now in the family unit.” And she’s like, “Yes, even our eldest son has seen it and doesn’t want to be around you and your energy.” And she’s like, “You unfortunately just come in and it’s like a tornado hit and it creates this feeling in the family.”

So she said that and I realized, without her saying it, that there was a lot on the line here. So I checked myself into mental health hospital for three weeks and really had to sort myself out and through doing so learn a whole bunch of fantastic psychology tools and things that I now have with me and have equipped myself to be able to change how I think and change how I respond and take the pressure off and be more realistic with what I expected of myself and be present and be kind and all these great things that I now can do. Still practice it, not perfect and I’m okay with it, but it was literally breaking point. For me, I treated that entire experience of how I got to that point, sorry, coming out of it with, if I don’t rapidly fix how I am acting, I will lose my family.

I’ll lose the very thing I’m trying so desperately to keep it. And it wasn’t from anyone’s intention, certainly wasn’t mine. But in doing that and doing that journey, I had to tell my work and had to ask for mental health leave and I had to have all those conversations and all the judgment or fear and inability to do my job and all that stuff. And learnt a bucket load on the way. And you certainly see people’s not just understanding of what you’re going through, if they’ve got lived experience or they don’t, but certainly I’ve got a lot of bravos and that takes courage from fellow colleagues to do that, who actually said to me, “Geez, I wish I had the guts to do something like this. I’ve never done that.” And I only had the guts because I didn’t see any other alternative, to be perfectly frank.

I think if my stakes were lower and I was in a neurotypical family and couldn’t cope with stress and I probably wouldn’t have said it. So I think I always try and encourage dads to, not just be vulnerable, but to be honest with themselves. I think there’s a lot that can be gained from sharing what’s really going on and what it’s really like, even though it’s difficult conversations with your family and with your work and with all these different people that you’ve got in your life because what’s come of it now is so much learning for me, but also now I’m out of the job that didn’t fully support me. They supported me, but on the surface, and when push came to shove, it wasn’t seen as a judgment of, well maybe I’m not going to be as good as my job.

Now, apparently if you have a mental health problem, it’s a cloud that follows you and it’s attached to you as an identity. And really it’s not one. One in five people every year. But it’s better than it was. But I certainly saw the culture of what’s accepted and what’s not. So now I’m in a place where I am, so everything’s improved now, but you have to go through that as well. And I certainly get from doing it why a dad would go, “It’s easier if I shut up. It’s easier if I don’t say anything to my work, to my family, I can just pretend everything is going to be okay.” But my challenge to every dad or wife or mom listening is it’s probably not. It’s just a question of when breaking point comes, Lisa to your earliest, it’s when is it going to come and how is it going to come?

And you just hope that it comes in a way that’s very safe and productive and it’s not too late. You know what I mean? The breaking point isn’t a, “I’m out, I’m done.” And whatever it looks like. You want it to be in a way that it’s a safe environment for people to talk about it. That’s really tricky. It’s really tricky. I feel glad that I can share it so openly, but I’m very mindful that every situation is very, very different and very tricky to navigate. Lots of reasons why as a dad, I’m not going to talk about it. I’m not going to talk about my feelings [inaudible 00:13:45] fear of judgment, pride or religion, all these things that go into it. But one thing I just want to, then of course, because I know I’m talking a lot, one thing is just that what I’ve held onto for the longest time, it was the way that I was able to accept the different path life was going to go down with Leo’s diagnosis.

What’s the best thing for him? And the best thing for him is for me to get my act together. The best thing for him is for me to get help for myself. It was the mentality I approached it with at the start, how can I get involved in therapies and understand? But it’s the same kind of mentality that keeps me going and keeps me making the right choices because what’s best for him is that I actually am at my best and that means I have to be vulnerable and I have to share and I have to do this stuff and I have to work on myself. What’s not best for him is if I ignore it and I pretend it’s not there and then I just think, “Oh, she’ll be all right.”

And I live life depressed and masked and in a job… That’s not best for him. So if there’s any kind of motivation to listeners, it would be that if you think about that, and I think at the heart of it, all parents do. That’s kind of how we are programmed as parents. You want the best. The best looks slightly different to what you thought it was before you get a diagnosis and before you have a life that’s going to go down the path of disability. We’re all Leo’s got. If I give up hope on myself or on him, then we don’t like to put goals and limits. But I certainly am, I’m aware that I’m the light. He needs me to move forward and show him what’s possible wherever that takes him. Not give up or put my head in the sand or think that that’s too hard. It’s not what I thought it would be and limits. And then what starts to become a pressing down on him. It’s got to be, I’m trying to pave whatever’s possible and I need to be at my best so.

Kristine Christ…: I think what’s great about your podcast too, and you’re so open about it, and I think there’d be a lot of dads out there, they’re like, “Shit, that’s how I feel.” And I think women tend to talk about their feelings a lot more than men. And obviously you’ve got a son who’s a little bit different to the other boys in his classroom or in here. And you did say you had an older son as well who I assume is mainstream. How is their relationship? What’s Leo like at home?

Rob Hale: Yes, look… Riley’s my oldest son, he’s 17. Leo and Riley have a great playful bond that you’d expect from any of brothers. It’s a bit of a rough and tumble. Riley likes it on his terms. He’ll want to engage with Leo when he feels like it and not any other time. Leo has the same mentality. He’ll choose when he wants to engage with Riley, but for the most of the time it’s a simple quick exchange. It’s playful. He steals his chips or something and drinks his Powerade and everyone’s bit of a brotherly banter, but it’s a playful relationship. He loves him. But he’s a typical teenager. I think there’s a huge part of Riley that he only lets us into every now and then. He certainly is becoming increasingly aware of what life’s going to be as the years go on.

He hasn’t articulated it perfectly, but he’s certainly aware that, smart enough kid to realize, so what happens when you guys get a bit older? What happens depending on Leo’s level of independence? What kind of responsibility am I going to have to pick up at that point? I think it’s a thought in his mind and he certainly has shared some frustrations when there have been challenging times that he certainly wishes it wasn’t as challenging. I think he’s lost some time. Before Leo came along. It was a bit of the three amigos time and that was a thing. And I think he loves his brother and he loves the family, but there’s a part of him that feels like he missed out on a few more years, a few more quality moments with the three of us that unfortunately as a lot of parents could relate to, our world has to revolve around Leo for a lot of it.

And that is unfortunate. It’s the same for me, it’s the same for my wife and it’s the same for Riley. We have to make some accommodations and more than what any other neuro typical family would do. So I think there’s a part of him that doesn’t like that and we are so mindful of that. We try and split up now. I think we do a better job than we have done where we stop trying to have things that all four of us are doing and all four of us are… We split up and I’ll go do something with him, or my wife will go do something with him. And it’s very rare we get all four of us, 17 and a six-year old with autism, to do something. But we’re actually okay with that because I think we’re more important about how do we make sure he still feels like he gets our time, our attention.

So a little bit tricky. I’m sure in a couple of years it’ll be fine because the age gap will then, the maturity you’ll set in and it’ll level back out again. Their relationship is okay. I think we carry a little bit of guilt for how he feels about it all as well. Not that it’s our fault, but it’s circumstance. But I think there’s a little bit of us going, “Yes, we understand. We totally get it.” We probably would’ve liked the same kind of freedoms that you think you missed out on as well. We probably feel the same way. But I think that’s fairly similar for most families where you’ve got siblings involved as well. He’s learned a lot as well. I think the great thing that he doesn’t realize is what I’ve now realized about myself, unbeknownst to him, just by being around, he has learned some incredible things that serve him in good stead.

My God, the kid has had to grow up quite quickly. He was already a old wise head anyway. And actually even seeing, not just the challenges and not just the caring and being a young carer at times, it’s actually more seeing what I’ve had to go through, how do we get through tough stuff like that? The lesson is you don’t just give up and walk away on relationships. You can work through them. When you are going through tough things, it’s okay to talk about it. It’s okay to break down in tears. I’m certainly not the dad that his sons’ never him cry. It’s probably the complete opposite. He’s probably going, “I can count on one hand the days that dad hasn’t cried or been emotional.” I’m not saying it’s certainly not a good role model, but he’s certainly seen what is okay.

Everything that a man can be and a father can be and a dad can be. It’s not just what it looks like on the surface, on the postcards and on Instagram. It’s actually, this is the reality of what can happen behind closed doors. And he is seen it firsthand. So I know will help you later in life when those moments pop up and he can draw on that experience to go, “Actually, yes, it’s okay to be like this. It’s okay.” He’s also a little bit worried and he’s asked the question, “Would my kids be autistic?” He feels like this is going to follow him around, which he’s right. It will. I just don’t know what level, but it will, yes.

Kristine Christ…: What’s a message that you would like to get out there for dads that are just finding out that their children, son or daughter have a disability that you wish you knew when you started the journey?

Rob Hale: It’s a good question. Someone asked me this the other day. I think I go back to there’s no point in not accepting it. I think the acceptance is key and it’s certainly fine to go through the emotions and go through the journey and go through the grief and all the different range. It’s all normal, it’s all valid. But get to a point of acceptance because if you don’t, you’re not doing what you could be doing for your kids and for your family. If you don’t accept it, then there’s a barrier there to helping your family, your wife, your other kids or whatever it might be. So I think find a way to accept it. If it’s nothing more than what’s best for my son or my daughter in this scenario, me not accepting it doesn’t help. It makes it about me.

How do I make it about them? And I think when you do that, then you get to a point of, my other advice would be, and it’s kind of like my little mantra, which I’ve put in the podcast, but I worked out why I did it. Because it’s the key things that I wish I did from day one, which is be kind, be present and be brave. I think those are the things that I really try and just quickly be mindful of. The presence is about you need to be, particularly autistic kids, nonverbal kids, present to see communication cues, to see the joy they have in things, to see their challenges, to see the context in which they’re trying to communicate. And most challenges Leo has is a result of communication challenges he has, not because he’s not a smart kid, he just can’t get his message across and we can’t receive it.

So if I’m present, I’ve got a chance of getting the message, understanding it and avoiding behaviors and avoiding some of his challenges and him feeling like he can’t. So I think all of that about being present is so important. And I think we spend far too much time, future, past, and one thing on the phones, whatever. It’s just be present and you’ll see a lot more and you won’t make it about yourself and you’ll make it about, and you’ll enjoy it a lot more as well. You’ll stop seeing the things that they are doing or they couldn’t do and you’ll start seeing things that they do. I still tell people, if I had that much joy from a salt packet that Leo has when he picks it up and can just stem on it for hours, my God, I wish my day started.

He can just find so much joy in the simplest things. The wind, it’s amazing. Just why don’t I have that joy? You’ve got to be present to see it. I think you’ve got to be kind to yourself too. Kind to yourself. Take the pressure off. It’s not about you. You are going to make mistakes, but it’s not about you. So be kind to yourself and then be brave. And the braveness is be willing, bear in respect to your mental health and what’s going on, but be willing to put yourself in a situation where you are a bit uncomfortable. You might have to go out somewhere for the first time and you don’t know what’s going to happen. And yes, there might be judgment, but if you don’t do it, then we play small and our kids don’t get to experience the world.

So we have to put ourselves in some situations where we know we’re going to be tested. And it’s about finding the balance of that. It’s not every weekend and every night. Absolutely not. I don’t do that. I go through waves where I’m more confident and more brave and Headspace can tackle it. And then I think, not this weekend, I’m not going to try. I’m going to play a bit safer because I need mentally a bit more of a break. They’re discovering, they’re changing every day. We have to do the same. So I think that would be my advice to anyone starting out.

Dr. Lisa Interl…: I think that’s right. I think also the changing every day, particularly with kids with autism, Louise comes up with new stems, as you said, we go through waves, something lasts for a couple of years and then it stops and then something else starts. And at the moment he just is talking nonstop, particularly before dinner. It just is incessant. And so I’m trying to get him to calm that down a little bit for me. So we have to do pinky promise not to talk. And he tries his hardest to keep his pinky promise, but you have to be on your toes, you have to be responding. And if I’m not responding, then he talks even more. So I have to concentrate on him for a while.

Kristine Christ…: It’s been so amazing to have you on, Rob. It’s a great perspective looking at it in a different way. And I really do hope lots of dads get on your podcast and listen in to some of the stories that you have and go to the therapy or go pick up your kid one day so-

Rob Hale: Totally.

Kristine Christ…: … You can meet another dad. Because that’s how our network started with our friends. We all met at school. So let’s hope that more dads go and pick up so that they can meet people as well.

Rob Hale: I totally agree. And I think just start in small amounts too. To anyone that’s like, “Well, I’m not sure where to start.” The whole reason of this Medium podcast is it can be on the commute to work and it can be in your ears and it’s low touch and no one knows you’re listening and no one knows how much work you’re doing on yourself. Actually it’s a really helpful and efficient way to get some feel like you’re not alone. And I think that’s a good place to start. There is a community of other dads that are doing it. Maybe you don’t talk about it in the same way, but just by listening and hearing, it’s comforting. There’s a comfort there that goes, “Oh, I get it. I’m like that.” And that’s just a good place to start. So you don’t have to download and talk about how you feel about the diagnosis of the first time.

You can talk about nothing. You can just talk about normal chat, but eventually it’s just comforting to know that. And I think the other thing to point out as well is this, again, it’s behavior in a very different way. I’ve got a guy’s chat. It is largely a chat about nothing and private jokes that have been going on for years, even in dads in the disability space and the autistic space. It’s also the same. It’s not every day venting about therapy and how we feel. It’s not. If that’s what people think they need to do, it’s not. It’s actually just aligning yourself with like-minded people that also get it so that on the day that you do need someone who gets it, that’s when you reach out. But it’s not daily barrage of how I’m feeling. That’s also important to understand too. Because I think it’s going to be scary. It’s like, “Oh, [inaudible 00:27:38].” You don’t have to. It’s just you’ve got a lot in common, so start there. But what else? Find out some other common ground and interests that you like and talk about that.

Kristine Christ…: Well, thank you for today. We’ve loved talking to you and for anyone out there, dad ability, and we’ll put that on our socials, the podcast so everyone can listen. But thank you so much for your time today. We’ve really, really enjoyed it.

Dr. Lisa Interl…: Thanks, Rob.

Rob Hale: My pleasure. Thanks Kris. Thanks Lisa. Appreciate you having me on and thanks again.

Dr. Lisa Interl…: Thank you.

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