When Routines Suddenly Get Hard

SPEAKER_00 0:00

Dearlessness. You know, like there's a moment many families um know well that a moment when everyday routines suddenly feel impossibly complex. When a simple trip to the grocery store requires strategy and uh patience uh you did not know you had. So today we thought like we are we will talk about what it means to support a child with autism not just as a parent carrying the weight alone, but as a family that is finding its way together. So hey dear listeners, welcome back to another powerful episode of Healthy Man Healthy Life. I'm your host, Avek, and this is the podcast is all about making mental health practical, accessible, and real. And we talk about the things that matter in everyday life, the struggles that don't always have easy answers, and um the small shifts that can change everything. So joining me today is a very lovely guest. Please welcome Paul Voss. So welcome to the show.

SPEAKER_02 1:11

Thank you so much for having me on. Really excited to be here today.

SPEAKER_00 1:15

Amazing, amazing. Thank you so much for joining us today, Paul. And um so I'll I'll I'll uh quickly love to ask you something.

Autism Is Not One Size Fits

SPEAKER_00 1:23

Like uh like when families first learn their child as autistic, and there are often assumptions or misunderstandings that make the journey harder than it needs to be. So what do you think? I mean, what's the one belief or expectations you think uh gets in the way early on? So what do you think?

SPEAKER_02 1:46

Um that's a really good question. I would say you have to learn a lot. And I I think when when you first like if if you're not dealing with a child who's autistic, you really don't have a reason to to learn a lot about the subject. But I think um one thing is uh the understanding that you you soon get that no two cases of autism are the same.

SPEAKER_00 2:12

Yeah.

SPEAKER_02 2:13

Um and I I think that is eye-opening as a parent. You you learn that pretty quickly, and uh yeah, as an offset of that, what works for one family, you know, may not work for another family uh as far as treatment goes.

SPEAKER_00 2:31

I understand, I know, yeah. And and um what do you think? I mean, how do the families usually realize that belief is not serving them, but um what helps them move past it?

Rethinking Treatment And Staying Open

SPEAKER_02 2:49

It's a another really good question because I I think it it depends um kind of where you are in your your journey. And you know, in in my story, there were things that happened long before my daughter was diagnosed that kind of got us to where we needed to be when we started the autism journey. You know, for me for me and my family, um you know, we we had believed by that point that um Western medicine isn't the right thing for everyone. So um we we kind of got past that belief um before we had the autism diagnosis. Um so I I do think it really kind of depends on other circumstances leading up to it.

SPEAKER_01 3:35

Yeah.

SPEAKER_02 3:35

But um, you know, again, um it it it could be very different for everyone. But for us, we had had other people we care about and love where um Western medicine had failed them. And afterwards we found out that there were um holistic approaches. And, you know, in some cases, like with my mom, um, she was schizophrenic. It was too late to make a change there. But in other cases, um, like with my oldest son, we were able to make changes, holistic health changes, and actually see benefits when Western medicine had failed. So that that was really um, I think for us, what what changed our mindset. And I think, you know, in autism specifically, just living through it day to day, you definitely grow as a person and evolve over time on your thoughts about it, um, your thoughts for treatment and really what's best for your child.

SPEAKER_00 4:36

Understood. Understood it's um it's interesting like how much pressure we put on ourselves to have all the answers right away. Um and sometimes the most helpful thing is giving ourselves the permission not to know yet and learn as you go, right?

Money Guilt And The Sleep Trap

SPEAKER_00 4:56

So exactly and so beyond the diagnostic itself, what do you think are some of the deeper kind of reasons that families struggle when a child is autistic?

SPEAKER_02 5:10

I mean, one is financial, they're everything is expensive, and most most treatments are not covered by insurance, especially from from my research, the ones that have better outcomes are not covered by insurance. Um, you know, ADA is a popular treatment, but if you research the success rate, if anyone is listening and and has found a success rate somewhere, please reach out. I have not. And for me, I'm not I'm not going to put time and energy into something that has no out, you know, no successful outcomes documented. That to me just doesn't make sense. Um, I'm I'm all for keeping an open mind, but if if a therapy's been around for years and and no one has been healed from it, to me, it's it's not worth my time. That that's probably the the biggest one, um, financial, but you know, mental. Um, you know, you may, you know, especially in our case, um, our child wasn't born with autism. So it was something that developed later. So as a parent, you you do feel like a failure because you failed your child, right? And this is me, you know, me, this was my personal experience. I feel like, you know, you failed, you failed to protect your child, you let something happen to your child that that caused this, and you you feel responsible for it, and you also feel responsible to help reverse it. Um, so that that's really another one. And then just the exhaustion, um, everything is exhausting, right? You know, in our case, and this is common in especially level three autism, which my daughter has, sleep issues. Um, as I mentioned before, like every kid with autism is different, but there are some similarities. So sleep issues are a common item, common issue. And um, so that that impacts everything, right? Like if you're not sleeping, shorter temper, easily frustrated, um, lashing out on things that you would never lash out on, you know, not being able to just have a clear head and think straight. So those are some of the other big impacts that parents definitely deal with.

SPEAKER_00 7:26

I agree. Yeah.

How Siblings And Friends Feel It

SPEAKER_00 7:29

Um and also, you know, also share like how do the I mean those pressures show up differently for parents um versus the siblings or extinguished family members.

SPEAKER_02 7:44

Yeah, for parents, uh you they're they're definitely you the the main protector of their child, and so they they have to be hyper-vigilant and they really understand cause and effect of situations, right? So I'm taking my child to a party, there's going to be food there that she can't have. She's going to want it. What is that going to turn into? A meltdown. Like, am I going to have to go and then leave? I think your siblings probably understand it better, but your friends and other family members don't usually understand that. Which, which why would they, right? Like they're not, they're not living in it. They also don't understand just the preparation that goes into going anywhere, right? Like you go for something with with a child that's not on the spectrum, you get their shoes on, get them in the car. For a child that's on the spectrum, there's a lot more planning and preparation that goes into it. And, you know, just making sure you're aware of like what's going to be there. You know, my daughter at one point loved running to water, and that's another thing that is is common, right? So is there going to be a body of water there? Am I going to have to make sure she doesn't try to run into it? Like there's just so many things that go on in your head that um that family members will never understand. I think with siblings, for for my situation, it was really hard for them to understand like how she reacted towards them early on. So one of the things she used to do a lot of was bite. And I know that um that really bothered them because they took it as she doesn't love me or she's mean. And they had to really understand that her biting was just a way of her expressing herself because she's not speaking nonverbal. Now the biting has gone away, luckily, but I know that that part was really hard for the siblings.

SPEAKER_00 9:38

Got it. Yep, yep. And that's that makes so much sense. And it's not just about uh managing the behaviors of the appointments, and I believe it's uh it's all about rethinking like how the whole family system works and uh that that takes time and a lot of uh emotional energy. So yeah.

Planning Every Outing To Avoid Meltdowns

SPEAKER_00 10:04

And um in a day-to-day life, um, where do you see the families hitting uh the most friction? Like what are the moments or situations where things tend to break down or really uh especially hard?

SPEAKER_02 10:22

Yes, I would say a lot of it for us started with lack of sleep or just being tired. You can still get sleep, but you're just tired from everything that you need to do to care for your child through the day. So I think exhaustion plays a big part in breaking that down. Um, the the other part I would say is um when when autism impacts other members of the family in a negative way, right? They maybe wanted to do something or go somewhere, and you can't, whether it's due to where it is, the environment it's gonna be in, you know, finances, etc. Those are really the two two big drivers I see against, you know, sleep or exhaustion, and then the inability to go do something that maybe you would have been able to do before. Um, whether again it's tied to what's gonna be there, who uh what's in the environment around it, or financially you just can't do it anymore. Those are really the two big ones.

Small Wins Journal That Keeps You Going

SPEAKER_00 11:26

And when a family recognizes that pattern, um uh what's the kind of realistic first step that they can take to ease some of that friction? What do you think? Because I I believe because I think a lot of listeners will uh definitely be able to relate to that and share.

unknown 11:44

Yeah.

SPEAKER_02 11:45

Yeah, great question. And that was kind of one of the reasons I wrote my book. Um, because there are positive things that come out of it. And I'll tell you, um, it's really hard to see positives when you're first dealing with a diagnosis. You're um, you know, if you're not getting sleep or you just want to help your child, there's a lot of things we've done. And I didn't include this in the book on purpose, but there were a lot of things we've done that we didn't see any benefit from. So you're you're putting your child through all these supplements or tests. Um, you know, maybe you're going the more traditional route, you're doing therapy and you're not seeing the benefits, you're spending all this money, and all you want to do is help your child. Like any parent wants to help their child, um, then you see your child have meltdowns, get frustrated. So it just snowballs. So I think the big thing is just um remembering that there will be good things that come out of it. It will get better. The other, the other thing I I really recommend is writing things down. So, you know, write down the wins that you have and and make a big deal about small wins because if you're only looking for big wins, you're gonna just constantly be disappointed. So, yeah, with my seven other kids, I didn't really care when they put their shoes on the first time or could get undressed for a bath on their own. But for my my youngest, it's a big deal. Every, you know, every step of progress we make is a big deal. And um, writing those down is so important because then you can remind yourself, okay, we started here, but we're not there anymore. You know, we've made progress in sleep. We've made progress in her walking on her own. Like there's so many things that we made progress in. And some of those are big, right? So sleep is a big one. But um, if I only look for those big milestones, I'm just gonna live in a constant day-to-day life of you know, looking for that big thing and then being disappointed when it doesn't come in the timeline that I've set or you know, that I want to see.

SPEAKER_00 13:47

Quite uh interesting. And like I said, listeners will definitely be able to relate to that. And it's not about fixing everything at once, but it's all about noticing where the stress uh concentrates and uh making one small adjustment that creates a little more breathing room. So that's very interesting.

Parent As Advocate Plus Family Health

SPEAKER_00 14:08

And uh when a family is trying to show up better for their autistic child, what do you think? I mean, what's an approach or maybe the mindset shift you would recommend?

SPEAKER_02 14:19

Yeah, I would say um remember as a parent, you know what's best for your child, and no one's coming to save your child except you, uh you know, doctors, specialists, like they're they're not going to save your child. Um, they might help them, but you you need to find people you trust and and really work with them. You need to keep an open mind because there's a lot of things that I thought I would never do, um, or I thought sounded ridiculous when I first started hearing about them. And now they've been some of the greatest benefits we've ever had on our child by by implementing it. One of the things that I think everybody should take serious is their personal health, because um, you know, events like autism or diagnosis may cause you to get more serious about health. And then you're you're catching up. Like the best time to take your health serious is when you don't need to worry about your health because it's like, you know, and you go down, you start, and there's so much it can be overwhelming. Um, so just start small. And one of the things that we did that really benefited us to me, it's one of the most important things, is like whatever we're doing for our daughter, we try to incorporate into our life too. Um, so you know, like sauna, we got her a sauna because of the benefits of doing a daily sauna, but my wife and I use that every day on our own. Um, grounding is another one. I ground all day. Initially, that was just something for her. You know, diet changes we did, you know, to support my daughter, but we implemented as a family and have had tremendous impacts on the health of everyone and all of my other kids. So I think whatever you're doing for your child where it makes sense, try to implement for yourself. And the other thing you'll learn is like there might be no benefit to you, but there might be a benefit for your child. There might be some things there's no benefit for your child, but it benefits you, and I think that can help a lot.

SPEAKER_00 16:30

I agree. And um, so like even when families are doing well, there are setbacks, meltdowns, misunderstandings, movements when it feels like nothing is working. Um, so how do families stay grounded and keep going when those hard days hit? What do you say?

SPEAKER_02 16:52

Yeah, I think remember what your your focus and intention is, right? So in my case, it it's you know, I always remind myself, my daughter wasn't born this way, something caused it. How do we help her? And so um there are days where it is super frustrating, right? Because you you see something come back that you thought went away, or you're really excited about some step you're taking for your child that you think is going to have a big impact, and then there's no impact. The other thing, going back to what I mentioned before, is like writing down the wins that you do have. And then when you have those days, like go back and read them and just remind yourself, keep reminding yourself and make a big deal about small things or things that I don't I don't even like saying small things because they're not for some children, like they are a big deal. You know, make a big deal about every accomplishment that you see. Um, because again, if you're not doing that, you're just gonna be, you know, what I defined as success early on was, you know, her fully speaking and um, you know, able to do all basic life skills. If if I kept that as the milestone, like I would still be constantly disappointed because I'm searching for that. And I would I would miss all of the progress that that she's made over the last four years. And it's not a good way to live, right? Like really celebrate everything.

SPEAKER_00 18:22

I agree. I agree too. So what helps a family reconnect and recover after a particularly rough period? Like, especially when everyone's exhausted? What do you say?

SPEAKER_02 18:36

So we we really benefited from a couple of the health changes we've made. Um, and I think it did bring us together closer as a family. Um, grounding was one. I admittedly, I knew nothing about it prior to the autism diagnosis. My wife mentioned it to me. I thought the concept sounded a little out there at first. Um, and and maybe for the listeners, like, you know, it decreases inflammation, um, it can help with sleep, it calms the nervous system. And um, I ended up reading a book after she mentioned it, um earthing the most important health discovery ever. And after reading that, I thought, okay, um, I'm still not sure if this will work, but I definitely want to try it. And we ended up buying a grounding mat on Amazon. And um, she the first night it was on her bed, she slept six hours straight. And that was the first time we had a good night's sleep in months. So, you know, implementing going back to what I mentioned before, like the things for your children that you're you're doing to help them like implement them in your life. So, like I ground my kids' ground, like go outside, spend time outside barefoot. Um, really look at what you're putting into your body too. Because um, you know, in the US, our I I don't even like calling it food because most of the stuff at grocery stores is not food, it's just chemicals. And um, changing the way you eat will help your mental health and you'll feel better about yourself and and you won't feel as exhausted. So even if you're not getting sleep, there's other things you can do to um help you feel less exhausted. But you know, going back to like the health thing, like focus on what you have control of and and double down on that, right? You might not have control over if your kid is sleeping through the night, but you you do have control of, you know, grounding, getting time outside, being cognizant of what you put into your body, and that that will help you be not only a better person, but a better parent and able to better care for your child.

SPEAKER_00 20:50

I agree.

SPEAKER_02 20:52

So if you have to give uh one advice to the listeners today, would that be uh uh that's a it's a tough one to answer because there's so many things that we've learned on this journey. Um I would go back to you're the parent and you know what's best for your child and just research everything, make sure you're comfortable with it. You you really need to be the advocate for your child and and keep that open mind. Like you your your views should evolve over time and and you should constantly be learning and and growing. So, and I I know most parents are doing that already. They're you know, parents of autistic kids are, you know, they're always looking, researching, reading, but just really keep an open mind and listen to, you know, if it if it's a view that you're like, this person's an idiot, like still approach it with an open mind and listen to what they have to say because you there's so much you can learn.

SPEAKER_00 21:49

Yeah, yep, exactly. And if listeners want to connect with you, how they can connect?

SPEAKER_02 21:56

Yeah, the best way is um I have a website, autismsucks.org. It has a link to um a blog, my social media, and then it has a direct link to my book. The book, Autism Sucks, Finding Hope in the Chaos, is also on Amazon as well. But websites really the best place to start. It has links to everything.

SPEAKER_00 22:19

Luckily, luckily. So uh DLSMS, what I'll do is I'll put all the links, details, everything into the show notes for easy reference. And um, I'll just say um, you know, DLSMS, that the work of supporting a child with autism is not about getting it perfect, it's all about showing up, learning together, and building a family culture where everyone's needs matter. So um with this before we go, I want to leave you with this that um supporting a family member with autism can feel like navigating without uh maps sometimes, and that's that's okay. So what matters is that you are paying attention, uh, staying curious, and giving yourself and your family grace along the way. So take what resonates from today and try one small thing this week. And remember that um you don't have to do this perfectly to do it well. Alright, so thank you so much, and thank you, Paul, for uh sharing your insights today. It it's really really helpful. And um with this cheelessness, this is your host, Avek and this is Healthy Mind, Healthy Life. We'll see you in the next one. Thank you so much.

SPEAKER_02 23:33

Thank you so much for having me.