Being a dad with MS

MS Plus acknowledges that traditional owners of the land this podcast has been recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past, present and emerging.

Kim: Welcome to the Learn from Me podcast series. Today I have the absolute pleasure of talking to Silas, who's a very, very busy dad who happens to have MS. Parenting can be a hectic time trying to juggle your own needs, your partner's needs, and then along comes children. So, Silas what would you say is the biggest challenge in having MS and being a busy dad?

Silas: Hi Kim, hi everyone. I think when your symptoms start flaring up and you're just trying to get on with your normal day to day and your MS isn't having it. That would be the biggest challenge for me is when I have plans to do something and then my body has other plans for me that day, maybe it's too hot which triggers my MS or maybe it's too much is stressing me out or whatever it is or my symptoms of walking or my ability to move, my mobility. Yeah, that would be the hardest thing when I want to do one thing it's my MS plays up.

Kim: So, you've got plans to do things, but your MS has other things in mind. And how does that impact you when you're being a dad and you might have things that you need to do with the kids?

Silas: Well, while we're chatting, I keep thinking, so every Saturday morning, it's my turn to have, like Saturday mornings as mum's break. So, I'll take the kids out, my wife's amazing, very supportive, great mum. Couldn't be more blessed. But I give her a minute on a Saturday morning to do what she needs to do. And so, we'll go to waterfalls, beaches, parks, whatever. We'll, just try and fill in time really and just have fun. But at the park we were playing and one of the kids, my middle child, Thomas he's nine, he had a floating airplane a styrofoam thing, and I threw it and I looked up, bang, just triggered vertigo, and I felt off balance and I hit the deck and all the kids looked at me like, what the heck? And I come up, I got rubble on my hands, a bit of blood and they're like, are you okay?

And I'm like, yeah it's just an MS thing. And apart from being profoundly embarrassed, it was kind of normal and they were cool, they were fine. So yeah, you just made me think of that. I will go and try and do my usual routine and then MS shows its face and surprise, who knew? You can get vertigo too, lots of fun.

Kim: And you said the kids just carried on. I think that's a really important comment you make because some of the dads I've spoken to sort of question when to educate their kids and what impact this might have on them. It sounds like you've been able to educate your kids well.

Silas: Yeah, I think at a deeper level, it's our perceived, it's my own perceived view of the community, view of others, what would other people say or think but in truth people, people just take you as you are and your kids especially, if you just, you know your kids, so you can work with them, but it's your own fear, right? So, once I had been pretty honest with the kids, I'm pretty honest with everyone that needs to hear it, my family, my wife and especially the kids, I just, I've told them enough to say this is what my MS does sometimes, and yeah, they didn't bat an eyelid, they just took it in their stride, they're like, okay, that's our normal.

Kim: So incidentally, just as things come up, they're learning more and more about MS.

Silas: Sure. I mean, so are we though, right? Like as people with MS who knows what five years looks like. They're on that journey with me there. I don't know you look at a family that's gone through something, there's normally, it's positive, it's normally positive, they have, the kids are more down to earth, or humble, or understanding, or empathetic, whatever the positive stuff is and I see that in my kids a lot.

If they see someone else in around town or, you know, family or community or school that has any issues, they're a bit more sensitive to it. And I love seeing that. I'm like, yeah, good on you especially my oldest girl. She's a sweetheart.

Kim: I've noticed that too, Silas, at our camps and at the zoo days we have, that it's amazing the empathy that they seem to have.

Silas: Yeah, I started off as a youth worker a few years back and there was just this lovely kid. He was big, he was tall, he was strong, and I'm like, man, there's something about this guy. He turned 18, he looked like a tough footy player. And then getting to know him, he had a mother who was deaf or had some disability.

And I'm like, that's got to be it. Like you're just the nicest guy, very down to earth. And I credit some of his great attributes due to his family life and his upbringing. So yeah, hopefully my kids can have a bit of that too.

Kim: Sounds like they build up their own knowledge and resilience along the way.

So for the people that are listening, maybe they're newly diagnosed and they're thinking about having a family, and as you mentioned before, sometimes it's around your own emotions, your own fear. What are some of the tips and tricks would you suggest to someone listening around deciding to have a family and being a dad?

Silas: Well, this is probably deeper than anyone wants to hear, but whenever I come across someone who is pregnant, MS or not, I just love pointing out. I'm sorry everyone, I'm sorry for how cheesy this is, but if they're expecting a baby, I love pointing out, I say you got pets? Yep. Your siblings? Yep. Parents? Yep.

Whatever. I love telling them, you don't know what love is. And they're like, what are you on about? I'm like, you might love your partner. I'm like, but you would die for this little kid. Like whatever, like whatever everyone else's own version of this is. But why miss out on, we have hundreds of reasons, but it's not, we're not ready or unsure, we're uncertain on the future, like there's a lot of fear, but nah, these little things come with their own love and you are just yeah.

It's a real-life experience to have kids, but if you're not vibing children, or you're not up for it, or you're not physically there, mentally, financially, whatever your valid reasons are, that's, that's you, that's totally. You do what works for you. But yes I definitely feel like I have experienced a different level of life with kids for sure.

Kim: Are there any modifications or changes you've had to make? To live well with MS and be able to be the dad that you want to be.

Silas: Wow, that's a great question, Kim. Yes, sadly, sure. I mean, I was out building water tanks for farmers and mines before MS. So, yeah, I've changed my life to work with MS. So, heat affects me, getting on the tools affects me.

I can't be in construction. So, I've changed the word you use, modifications. I've slowly, each year, I've made small changes. Like instead of doing something super amazing going on a hike, sometimes we'll play, sit and play the Switch the Nintendo Switch on a bad day, with the air conditioner running, and I haven't got far from home, but the kids having a great time.

I would rather be Out the back throwing balls and you know, but some days yes, I have to take it as it comes and I definitely have made some modifications and deep down. My main goal has to be that the kids haven't noticed anything, but I was like that with covid pandemic and all that stuff. My goal was to not impact the kids.

You know what I mean? Like this is something I'm going through but as far as they know life is great, great We're playing the switch today instead of climbing a mountain. Okay, whatever.

Kim: Sounds like they're adapting as you are.

Silas: Yeah, and just working with what we've got in front of us and I'm a fun person by nature and I have I find ways to you know, make them laugh and have fun and work with my strengths.

Kim: It sounds like attitude's got a big part to play. It sounds like you're making the most of what you've got big time.

Silas: Yeah, and It's weird to say again cheesy. I don't know why I'm worried about being cheesy, but Because I have MS I signed up for the NDIS. I was a bit late to the game. I only did it recently After almost 10 years of MS, but I was like, nah, after my last flare up, I'm like, nah, I'm doing this.

And it's great. my kids are like, dad, the cleaners here. I feel like I'm a king all of a sudden, I'm like, well, come on in, cleaner, clean, clean up this, you know, obviously I'm tidying up the house before they get there. Cause that's embarrassing, but what an opportunity. I never had that. Luxury before, so yeah, you work with what you got, right?

Kim: But it sounds like you'd encourage other dads to reach out for support and in doing so, you're continuing on with your parenting, but someone might be doing the cleaning, which frees you up to have more quality time with the kids.

Silas: Yeah, it's very un-Australian to ask for help in our culture. In many cultures, but you know, as a dad, you're not like, yeah, man, I've been in tears when, when I got diagnosed.

I'm like, what am I going to do for work? Can I protect my family? Like all that fear, worry, doubt, emotion waves over you. And what does the future hold? Am I going to be able to do this and that? So yeah, reaching out for help is almost a new skill. You got to master. It sucks. But you do it and then you see that it's not too bad.

You're like, I'm glad I did this. And often, for me, I learned the hard way. It wasn't till my last flare up that I was like, oh, I think I need to do things differently. And it was slow and whatever. And it was difficult. But later, as you look back I personally am glad that I did reach out for help.

Kim: That's awesome. I think that's really important. Because as you say, sometimes we want to be as independent as possible. But as a busy dad, you might need support. And particularly if you're having a bad day. You know, the ups and downs that MS can do, as you said, with your example of the park. So it's being able to modify where there is, I'm sure the kids hated playing switch.

Silas: I know my kids would love it.

Oh, they love it. It's like my full time job trying to find ways to not let them be on the switch or on the computer or the iPad. You know what I mean? Like I'm often trying to outsmart them with, why don't we do this? Yeah. Yeah. Everyone knows the challenge.

Kim: Absolutely. And so.

You've got three children, 11, 9 and 4. That's a big juggle in itself. And you were saying before that they're quite little ambassadors of their own. Tell us a little bit more about that. Tell us how they're ambassadors for MS.

Silas: Well, you know, I did the MS read a thon in school. It wasn't until I got diagnosed that I figured out what MS was, sort of.

Because I'm pretty honest with them, like, why are you going to the hospital for your treatment? Like, why The kids ask questions. Like, why are we picking dad up from Hospital. Each month. Or, why isn't dad coming? And yeah, like, there's a lot of awkward moments of me saying, well, I can't today, I've got, my MS is piling up, just You know, have a lovely day, good luck at your presentation, I'd love to be there.

Yeah, there's some painful conversations, but through that, you're talking about it, they're asking questions, and so we, we have that conversation. And now, when they do their readathon, they're like, wearing the shirts, they're telling their teacher, my dad has MS, and I'm like, oh damn, come on kids, let's just ease up on telling everyone, like, I'm open, I'm okay with that.

And they're not in trouble, but I'm like, you know, it's awkward. I didn't need their year three teacher knowing today, or, you know, like, I'm sure they would shout it in assembly from a microphone if they could say, but the response is beautiful. The teacher says, Oh, we've raised even more for MS.

Because one of our students has a dad that has it, so you know, that breaks your heart a little bit. So it's positive though, it makes it real it's a normalized thing for others because they know of someone with MS, it's not just a campaign anymore, it's Ava's dad, which is, you know, I feel embarrassed even saying that, but yeah, it makes it real.

Kim: Absolutely. And they're already, you know, starting to help others, which we said before creates really good humans. Yes.

Silas: Yes. And that's what we want, right as parents?

Kim: Absolutely.

So to finish off today, I just wanted to ask you what your three top tips might be for other dads who have been diagnosed with MS.

Silas: Great question.

Top tips would be, do what you can do. So if. If I couldn't do what I was doing before, like, and you have to think of a new way to do it you know, the kids are gonna love spending time with you, they're gonna love the, the memories that you share together, so just do what you can do and that there's plenty you can do.

Like, there's lots of fun if you stop and think of other ways to do it. Being open and honest would be my second one. When it's the right time at In the right place or whatever. Yeah. Like as you're being open to other people you kinda. You get a lot further. People are, you know, that I would say with knowledge comes understanding and my third one I'll steal from a great I won't reference them right now, but it's just being present.

So. Who cares what you've got or what you're doing? Like if you're there and you're sitting next to them and you're saying, yeah, I can hear the truck to your young ones they're great mindfulness tools. These young kids, they're like, Ooh, a plane. And you're like, yes, that is a plane. You're not worrying about everything.

You're there in that moment. And so I would say my, for my third tip, I'd say just. Be present and you can do that. If you can do that, great. It's just wonderful because sometimes if I'm getting zaps, I call them zaps when I get that electric. Shocking feeling from my nerves sending them messages.

Sometimes I get pain, my go to would be to watch a show or go on my phone. But if my kids wants to play Lego, he's like, can we play Lego? Yeah. Just being present being there with them, it goes a long way.

Kim: Beautiful messages there, Silas. Thank you so much for sharing your story today. So inspiring. We so appreciate it.

If you'd like to talk to someone like Silas, Silas is one of our phone support peers who also facilitates our men's telegroup. So if you'd like to connect in with other dads and people like Silas, please don't be a stranger. Please call through to MS Plus Connect on 1 800 042 138.

There are people like Silas that are there to support you. Don't be a stranger. Thanks everyone. Bye!