April 19, 2021

Creating a Support Community for Parents of Autistic Children with Rob Gorski

Creating a Support Community for Parents of Autistic Children with Rob Gorski

Creating a Support Community for Parents of Autistic Children with Rob Gorski


Our featured guest for today’s episode is blogger and podcaster Rob Gorski, The Autism Dad. Rob has built an online community for families with autistic kids starting with his blog over a decade ago. He chats with Mai Ling about the origins of his online efforts, specific struggles he’s faced with his own kids, and some of the challenges that come along with sharing such personal information in a public forum.

Contact Mai Ling: MLC at mailingchan.com

Contact Martyn: Martyn at martynsibley.com

 

Transcript

Introduction Audio 00:00

That you know, as a dad, every time I say I couldn't be prouder, they always prove me wrong.

Mai Ling  00:13

Welcome to Exceptional Leaders with Mai Ling and Martyn, where we give you front row access to intimate conversations that are shaping the way the world is supporting people with disabilities. If it's happening, it's being shared here. I'm Mai Ling.

 

Martyn  00:25

And I'm Martyn Sibley. And today we're going to be chatting about Rob Gorski and his interesting story. But before we get to that, Mai Ling, how are you doing?

 

Mai Ling  00:34

I'm good, I'm settled. We actually did a move in Arizona, and I have lots of boxes. But I think, I think I know where the majority of my things are. So that's, that's a good thing.

 

Martyn  00:45

So where was the move from in to again,

 

Mai Ling  00:48

We had gone to California for a little bit while I was working on the project with Cognixion. And so now we're back in town. And, you know, a lot of people are vaccinated, and we're able to start seeing people again. So, it's just been wonderful.

 

Martyn  00:59

Yeah, I think last time we caught up there was the spring break coming, wasn't it? So, so from our side in England, today some of the shops have opened back up. And as you say, the vaccines, they are much more on course with the rollout. So yeah, there is a sense of the springs in the air. We had, ironically, we had snow last night and then this morning, it was beautiful warm sunshine. So, we're all over the place with the weather, but there's definitely a general sense of spring and new near sun. Yeah, kind of, I guess optimism and positivity is a little bit back in the air, which is nice to have.

 

Mai Ling  01:35

That's wonderful. Gosh, we need it, don't we?

 

Martyn  01:37

We do. We do. And yeah, I was looking at, I've got my Happy Birthday balloon up in front, which has become a talking point on all my video calls today. To be clear, it's not my birthday, but Disability Horizons was 10 years old on Saturday, the 10th I think it was of April. So, 10 years after Srin and I had a you know, idea on in a Los Angeles Beach, on a California road trip. And yeah, just amazing to look back, we did a live stream to kind of share that story of how we had the idea, but also how we actually then got the first website version bill and got the first articles written and published. And yeah, how we basically created the magazine. And then this week coming is Purple Goat's (http://purplegoatagency.com/) first year anniversary.

 

Mai Ling  02:24

Wow.

 

Martyn  02:24

April is definitely a thing about new beginnings. I haven't even realized it was the same month until just now. But yeah, like literally that April seems to be quite a big month for my projects anyway.

 

Mai Ling  02:36

That's wonderful. And I invite our listener to find that video, where can they find the one of you and Srin together? Because it's always great to hear the behind the scenes of how a company got started.

 

Martyn  02:45

Definitely. Yeah, thank you for that as well. So, it's on my social media. So, if you Google me, YouTube, or I think it's on Twitter, Facebook, LinkedIn, but yeah, all my social media channels anyway.

 

Mai Ling  02:57

Excellent

 

Martyn  02:58

Cool. So in terms of guest today, Rob, who you've interviewed, I've got a couple coming up soon, where I've done the interview, but you've been knocking them out left, right and center, being an absolute star. So yeah, tell us a little bit about Rob. It'd be great just to set it up for everyone.

 

Mai Ling  03:15

You know, he's amazing. He's an absolute leader in the space, I know that there are several parents who have been very active, you know, creating books, podcasts, blogs, all of that, but he has the designation of the autism dad. So, when you have a name like that, how can you not have him on the show, right? So, I've been following him for a little while, finally reached out and connected. And it was exactly what I thought it would be, he is just a typical guy, which is great meaning, you know, he's not someone who had an amazing influencer position, you know, in another industry or anything like that. He literally was this, you know, parent who suddenly had a child who has been diagnosed, the diagnosis is actually part of the journey, you know, you have the child and you have all of these questions, right. And all of these is this typical, you know, that type of stuff and looking for resources. So, he definitely had that type of journey. And he reached out in terms of blogging, which he said, and he says this in his interview is that it really wasn't to help people initially, it was for him, it was like more cathartic, you know, putting it to paper, and maybe putting it down as a historical thing for him to look back to. But as most people who have become successful bloggers have found out is that once you put yourself out there, you know, people they want to connect, especially with somebody who's genuine. And I really think that our listeners gonna really enjoy the interview today. Because Rob really is just a nice, approachable, typical person who started a blog and now has become an absolute leader in this space.

 

Martyn  04:47

Yeah, you know, I think we talk about formulas and steps to take you know, that they're very helpful when learning and almost empowering us to take step forwards and so there's very much a place for that structure. But I think that point you made around the vulnerability and the authenticity, that's such a key ingredient that you can't copy or force it. I mean I remember when I started blogging in 2009, and my kind of one person audience was 14 year old me and it was like all the things that I wish I had had at that age that didn't exist, because the internet was, I think I vaguely was on like AOL messenger when I was like 14 years old. And I was born in 83. So, you can kind of do that the internet was not the place it is now. Right? So, I think that that having someone in mind when you're writing can be really helpful if people have creative blocks, but definitely that authenticity and vulnerability is the big magic ingredient. I think even now, when we work at Purple Goat with all the influencers, the ones that are just so truly themself are the ones that ultimately win. And then also that point you made about going on to a leadership position and interviewing other people. It's that kind of process and the rungs of the ladder that you kind of go up on that. So, the journey say, yeah, it's gonna be really, really cool to hear a bit more about Robert when listening. I also wanted to just touch on that kind of area of the role of parents. So, you know, again, when I was growing up, there wasn't the same kind of blogging, podcasting, social media. I don't know if my mom or dad would have embraced that. It's quite interesting thought process to have in itself. But I think the role of the parents is so important, in you know, finding answers for their children's future, but at the same time, giving the children the space to become their true, authentic self. And I just think that whole role of a parent in general in life is so so important. But I think in the disability world, there's such a big space for parents to help trying to change the world to use my inverted commas to change the world. But what about you Mai Ling? What's your sort of take on that kind of different dynamics at different parts of the community?

 

Mai Ling  07:11

Yeah, absolutely. And also, advocacy. So that's really important, whether the parent is an advocate or the person with the disability. This makes me think of, I love her, you love her, Cassidy Huff (https://cassidyhuff.com/). She was a fellow co-author for our first book Becoming an Exceptional Leader (https://www.amazon.com/Becoming-Exceptional-Leader-Accomplished-Changemakers-ebook/dp/B08DWWW8X9). When I approached her, she was only 17, Martyn. And so, we had to get her mom's approval, but she had become, and is, a leader in the space of Conradi-Hünermann syndrome, which is a very, very little-known diagnosis. And so, she had become a voice in the space. There's not many, you know, families that know about it. And parents were reaching out to her on Instagram, because that was her space, because she's young, she likes that platform. They were reaching out to her and asking questions that were more like, over the lifetime, you know, instead of thinking of like, right now, my child's been diagnosed, it's like, wow, you're 17, your so accomplished, you know, what can you share about what it what it looks like, at this age, and you know, as a parent, what are things that I should be considering? And, and so she has such a wonderful story of she and her parents and how they've become leaders for, you know, parents that are going through this diagnosis. So, it's just so beautiful. So, if you're interested, definitely scroll through the podcast. And you can look up Cassidy Huff and hear her interview. And then she's also one of the chapters in our book, "Becoming An Exceptional Leader". But thank you for asking that Martyn. Yes, there are so many so many amazing people who have just really accepted the responsibility, because that's what it is of becoming a leader and a voice and a resource for people. And it all comes from this just genuine and beautiful space.

 

Martyn  08:45

Absolutely. Absolutely. Well, before we get into it, a couple of quick shout outs to usual social media plug. So please, as always, do engage with us on online on Facebook, all the usual places. Come to our website, exceptionalleaders.com and sign up for the mailing list there. And of course, if you're feeling exceptionally generous, please do give us a review on your podcast platform as well. We really appreciate all your interaction and engagement with all of our interviews and content. So, I think shall we get back to the show, Mai Ling.

 

Mai Ling  09:18

Yes, I think you're gonna love it. Thank you. Well, I'm so excited to be here today with Rob Gorski. And I feel like I'm with a fellow podcaster. Here, you should see his setup. I'm seeing him on zoom right now. He's got it all going on. He's also an expert in this space, having completed 70 of his own podcasts and over 12,500 blog posts. So, this is just absolutely amazing. welcome, Rob. How are you?

 

Rob Gorski  09:45

I'm not doing too bad. Thank you for having me. I appreciate it.

 

Mai Ling  09:47

Fantastic. So, we are right at the precipice here of the time change. And before we started recording, Rob, and I started to just talk about how we're going to be, you know, working this out and he brought up a really interesting point. I mean, literally he said, stop. I want everyone to hear this. So let's get back to that. Rob, you were saying that you're in Ohio, you need to change the clocks. And what are your thoughts on this?

 

Rob Gorski  10:09

Yeah, I hate time change, like it's, it's, I've written about it so many, like every year, it's this thorn in my side. And the problem is, it doesn't make sense anyways, I don't think any more. But like when you have kids that have special needs, whether they're autistic or whatever, they have these like hard coded biological clocks that they don't recognize our time change, right. And so my kids will be thrown off for, they are better now, as they've gotten older, it's not as huge of a deal. Like when they were younger, it would take weeks for them to adjust to time change, like, depend on which, whether you're going forward or backwards, like you get up for school an hour earlier or an hour later, right? And they don't recognize that change, they're up and ready to go. And if they're not, like trying to convince them that it's not really seven o'clock anymore, it's eight o'clock. It just doesn't, there's no logic to it. And yeah, and it presents a lot of aggravation. But, you know, as they got older, I think they tolerated a little bit better.

 

Mai Ling  11:09

That's an excellent point. And I've dealt with this in the school system, you know, where they come in that next day on that Monday, and they're just not ready. You know, there's just like, Whoa, what is going on? And it's just that the the biological clock is just out of rhythm, the circadian rhythm. Is that what that is?

 

Rob Gorski  11:24

That's sleep, I think, but yeah, well, like my kids, they, they will just lock into this routine. And it's come hell or high water. That's what's gonna happen. You know, and something as arbitrary as time change. It just doesn't click. And they're absolutely right. Like, my kids are super logical. A lot of kids are on spectrum, just super logical kids. And it makes no sense. And so it's like, they refuse like they're protesting on on the merit, like, this is just stupid. I'm not going to recognize it. And I wish somebody would listen, you know, because it's, it's a nightmare for everybody. But it is.

 

Mai Ling  12:02

I love this. We should make this a thing. So let's write a blog post and like, have people sign it, we can get a petition going, and we can change it. Oh, my God, I love this. So Rob, you've been very transparent about your family life, and your children, Gavin, Elliot, and Emmett? How old are they now?

 

Rob Gorski  12:19

Gavin just turned 21, in January. Elliot just turned 15 on the fourth. And Emmett will be 13 on end of June. That makes me feel really old. But, I mean, they're awesome kids. So um, you know,

 

Mai Ling  12:38

So they are all teenagers. And I have to tell you that there are still the stereotypes that when you hear autism, you think four year old boy. Right? So tell me a little bit about your children and how their diagnosis has affected you to the point where you have become The Autism Dad.

 

Rob Gorski  12:55

Well, first of all, my oldest was diagnosed in 2005. He had a lot of really kind of bizarre behaviors, a lot of aggression. He went through a period of pretty significant regression, where like, it's like, we put in a bed, Gavin, and he woke up another person, it was it was a significant change. He has childhood disintegrative disorder, which is a rare form of autism, where they develop, had all their milestones, and then like, bam, they're different.

 

Mai Ling  13:21

I have not heard that.

 

Rob Gorski  13:22

And that was my frame of reference as to what autism is, right. So when my other two kids came along, I didn't notice anything I thought everything was was fine. Because my basis, my frame of reference was our oldest. And turns out, that's just not a good frame of reference. And every kid is different. And so, you know, my two youngest are very high functioning, most people wouldn't pick up on anything. But most most parents would, you know, because you know what to look for. But they are, are brilliant they are, they're very social. Lockdown for COVID has been really hard on them, because they just, they miss all their friends and being in the classroom and stuff like that. My oldest, is more impacted. He looks like a 21 year old, but in a lot of ways, he's more like six, seven ish in there. And that's challenging, because you see a grown man, sometimes acting like he's five years old. And you have to really be in a state of mind where you're, where you're aware of what's actually happening, because otherwise, it gets really difficult to manage. It's frustrating for his brothers too sometimes because they, like they understand but but it's still it's just difficult thing to manage. Like you don't always remember that there's more going on behind the scenes than than what you see on the surface and...

 

Mai Ling  14:46

Can I just take one moment? You went through it really quickly, and it's something that I also needed to re-educate myself on. You mentioned childhood disintegrative disorder, it's also known as Heller syndrome.

 

Rob Gorski  14:58

Yes.

 

Mai Ling  14:58

And it's a rare disease, Rob. And so this must have been very difficult for your family to pinpoint in terms of, you know, going to the right specialist, finding the right diagnosis, and then just going to read a little bit to hear and the highlight of the word is disintegrative, right. And so I'm thinking like autism, where you have a child who has natural progression of language, social skills, eye contact, all of that, then all of a sudden, what was the age where you did start to see...

 

Rob Gorski  15:25

For the diagnosis to be accurate, I guess it has to happen somewhere between the ages of three and fours in that area. And parents describe it as putting their child to bed one way and they wake up someone else. And I'm, like, I'm telling you, like, I know, that sounds terrible, but it's like, it's like, we put in a bed, Gavin and he woke up, it was like, someone switched him out with a robot kind of, in a way.

 

Mai Ling  15:28

Wow...

 

Rob Gorski  15:29

You know, his likes his dislikes changed, it seemingly overnight. He didn't like to be hugged anymore. He wasn't as affectionate as he is, he was prior to that. And I think in reality, it happened more gradually. But but I think you hit a threshold where you can't ignore it, like, it just becomes in your face, like, like, you can't deny that it's happening. And that was about three or four, because I've written about it a bunch of times, and it feels like to me, like we put him to bed. And then he woke up completely different. And it's really hard as a parent, because you grieve, but then you feel guilty for grieving because you still have your child, right, but the child that you knew, doesn't exist anymore, and they're never going to, and so you have to get to know, the child that's there. And that was, that was really hard. That was really hard to, to process. And to accept, really, I mean, and then nobody understands. And so you're sort of in your own little tiny bubble, trying to go through something that almost nobody has, goes through. And, you know, I've talked to the parents who feel like, you know, like, they feel guilty, going to support groups or whatever, because like, you're grieving, you feel a loss, like, you feel like you're, you feel like a child almost died really, like, they're not they're not there anymore. But if you go to a support group, for people who lost kids, you have people who actually lost their kids who don't have them anymore. And like we still do, right, and they're just different. They just changed. And so there's, there's no, there's nowhere for us to go, you know, the diagnosis process is basically exclusionary, right. So there's no test for it. And it took, I think he was officially diagnosed when he was 15, I think, the official. Because they rule out everything else, nobody wants to diagnose it. All of his experts are at the Cleveland Clinic and Cleveland Clinic is amazing. His neurologist that he had was the head of the pediatric neurology, and he's been all over the world. He has, you know, he said that there's, there's maybe five people that command over the course of five or 10 years through the Cleveland Clinic that actually have this diagnosis. So it's, it's like, it's incredibly rare. And those numbers may be wrong, because it was a little while ago, but, but it's something where like, they just don't see it, most doctors will go their entire career and never see anything like it. When they are approached with it, nobody wants to diagnose it, because it's, it's not a good diagnosis. I mean, there's no fix, there's no cure, there's really nothing you can do. And Gavin presents a little atypically, from what little we know of this, whereas a lot of kids will regress, but then they plateau. And then it's just that's just kind of where they are. And he sort of ebbs and flows. He can master skills, you know, he does, he does it really well. But he has to constantly practice. And sometimes he'll go through periods of time where he doesn't remember how to do something. And so we have to, you know, constantly, a lot of repetition, in order to keep him, you know, to a point where he can function on his own and be as independent and happy. And he's a happiest kid you're ever gonna meet. I mean, like, he never complains about anything. He's got a lot of health issues. And he, you'll never hear him complain. I mean, he just, he just is a happy kid. And he just decided he's gonna move out, which is...

 

Mai Ling  19:13

Oh, these babies.

 

Rob Gorski  19:14

I have mixed feelings about that. But I think it's an awesome thing. I think that he can do it. I mean, not totally independently, it will be assistance and maybe like a group home where you can live with some friends or something like that. But going from thinking that I was going to be raising him for the rest of my life to him beside, and you know what, I think I want to move out and he's making plans and he's, I mean, he's, he's come such a long way.

 

Mai Ling  19:38

Fantastic.

 

Rob Gorski  19:39

That you know, as a dad, every time I say, I couldn't be prouder. They always prove me wrong, you know.

 

Mai Ling  19:46

O, Yeah.

 

Rob Gorski  19:47

And so, you know, getting him out on his own. That's a huge thing. And I'm really excited that he's excited about something.

 

Mai Ling  19:54

That's beautiful. And that's how every parent is, you know, you want them to get out of the nest. Right. And at the same time you have the umbilical cord tied to them. So yeah, exactly. It just never ends.

 

Rob Gorski  20:06

No, it doesn't. But you know, it's it's a direction that I didn't see coming. I didn't think it was even possible. But he proved everybody wrong all the time. So, you know, someone's gonna do, it's gonna be him, and I'll be nervous, but, you know, whatever we do to support him. And as long as he's safe and happy and living his life, then I'm all for it.

 

Martyn  20:27

Oh, excellent.

 

Mai Ling [Sponsor Ad]  20:30

I've always said the most valuable things I've ever done to increase my business and industry knowledge in a very specific niche of disabilities was always related to learning from other people, whether it was going to conferences, introducing myself and connecting directly with LinkedIn messages, or asking people for a warm referral. hearing other people's stories and finding pearls of wisdom has been a priceless part of my journey. And ultimately, my success with various offerings is directly related to these. That's definitely why I created this podcast for you, and also why 13 other amazing disability leaders and previous podcast guests join me to write a book for you. For less than $15 you can get intimate stories and priceless startup journeys from 14 exceptional disability leaders, including my cohost of this podcast, Martin Sibley. So, I invite you to go to Amazon search for becoming an exceptional leader and get this book today.

 

Martyn  21:21

Here is another great podcast serving the disability industry that you might enjoy.

 

Rob Gorski [Podcast Introduction]  21:34

My name is Rob Gorski and I host The Autism Dad podcast (https://podcasts.apple.com/us/podcast/the-autism-dad-podcast/id1450723980). Here on the Pod I take on lots of different topics ranging from autism, special needs parenting and parenting in general, to more sensitive topics like vaccines, COVID, and other things that impact our daily lives. I think it's important that we be able to talk about things even if we disagree. I love bringing parents on the Pod and getting to know them for the very first time and giving them a platform to share their stories. This helps them to connect with other parents who get it. And it also provides a sense of comfort and validation to those out there feeling isolated and alone. I also try to focus on relevant current events as well. I've had several experts on to help educate my listeners about COVID the vaccines and what we can do to protect each other and our loved ones I deal in facts and we don't have to agree to be friends. Want to be on the pod, you can find me at theautismdad.com and listen wherever you get your podcasts.

 

Mai Ling  22:25

Now, let's get back to our amazing interview. So let me ask you what got you started saying you know what, I want to pull back the curtain and I want to share what's been going on here in such a big way?

 

Rob Gorski  22:37

Well, people give me a lot of credit for that. And it was actually an accident. And I didn't do it with the intention of anybody ever reading it. My wife at the time, noticed that I was I was struggling with, I was emotionally struggling with a lot of the stuff that was going on. Because back in 2005, being diagnosed with autism, it was still really rare. Like it wasn't something that you knew about. If you knew, if you heard about autism, it was rain nan or something and, and I was just, I was just, I was struggling to process and understand what it meant. And and whatever. Now I was overwhelmed and frustrated and scared and whatever. And she's like, oh, you should just like start a journal or something, write the stuff down. And I don't do like paper and pencil, like everything I have to do is like technology based or something. So like, she's like, why don't you start a blog. And I'm like, I don't even know what that is. And you know, she showed me and I and I set up. The original blog was called Lost and Tired. Because I thought that's how I felt it was lost and I was tired and.

 

Mai Ling  23:36

Sure.

 

Rob Gorski  23:36

You know, and the whole purpose of it was for me to have a safe place to just sort of word vomit everything that I was feeling in a way that you do when you don't think anybody is ever going to read it.

 

Mai Ling  23:47

Right.

 

Rob Gorski  23:48

I was naive, I didn't understand how everything worked at the time. And, and it was very much not private. And I don't know how I never shared anything. So like I don't know how people found it. But they started sort of getting comments. And it's from parents who were were saying that they've they've lived all these years, and they thought they were the only person who's going through something like this because nobody was talking about it there. At least there weren't any dads talking about it.

 

Mai Ling  24:14

Right. This is in 2010. So we're talking 11 years ago.

 

Rob Gorski  24:17

Yeah, so it's like 11 years ago. And so like I'm, I'm somebody who likes to help people. I was a fire medic for a long time.  I loved helping people. And I got hurt and I ended up having to quit doing that, I couldn't do it anymore. And I felt like this void where like how am I going to help people still and so I started to realize that I am helping people like, like I'm getting emails from people all the time where they said like thank you for, for saying what you said last night because I don't know how to say that. Or I can I can have somebody read it. And then they understand where I'm coming from instead of me having to try and come up with the words myself and so people were finding comfort and validation based on on what I was writing And I'd never intended that to be the case. So like, that's why I say I think people give me too much credit in the beginning because like, I didn't know what I was doing. And it was unintentional, but but it turned into something that I think is really special and to be around for 11 years, almost now, I think is is an accomplishment, because a lot of absolutely logs and stuff like that, they just they started and they stop, and people just stop doing things. But you know, it's just, it's just grown. And, you know, I can connect with people all over the world. And I get to work with really cool companies and, you know, try and bring as much positive to the world as I can. And I involve my kids, because I'm raising my kids to try and be better than I am. And which is, I mean, a low bar for them, I guess, but they're better. And we use our experience to help other people.

 

Mai Ling  24:23

O wow. Absolutely.

 

Rob Gorski  25:54

If I make a mistake, it might make me look like like an idiot. But you know what, maybe somebody can learn from it. And if I if I don't share the good and the bad, then it's, it's sort of disingenuous, and it's not, it's not accurate. And one of the challenges that I found is the kids are getting older, was was trying to balance privacy.

 

Mai Ling  26:16

Yes. That's the word that was jumping out of my mind. Yes,

 

Rob Gorski  26:19

Yeah. And when they were younger, it was just, you know, just write whatever you want to write because babies are, they're not gonna care. And, and it was never is never anything negative about them. It's just the experience and what I want, what I was going through. As they got older, and they were in school and stuff like that. And like their teachers read the blog, and the principal reads the blog, and their their friend's parents read the blog. And so there's, there's not really, there's no way to really hide anything. And initially, I kept us anonymous. It was, we used initials, we didn't use last names, nobody knew who we were. But then when I started get interviewed, like in newspapers and stuff like that..

 

Mai Ling  26:22

Right, right...

 

Rob Gorski  26:58

Then it just sort of became there was no closing that door. And so then I just, I was more careful about respecting my kids privacy. And I just I learned again, today my youngest reads the blog.

 

Mai Ling  27:11

Wow

 

Rob Gorski  27:12

Which like, I'm okay, I'm okay. Well, I guess it makes me uncomfortable. But it's, I mean, there's nothing in there that they don't already know, or they're not already living through. And they like to be a part of helping people navigate some of the things that they have to navigate. They like helping other kids who may be struggling, they like to be part of the solution and not part of the problem. So I involve them as much as they want to be involved in as much as I'm comfortable with them being involved. But on the news, they've been interviewed on TV a few times.

 

Mai Ling  27:45

Wow.

 

Rob Gorski  27:47

And then you wonder, like, should we be doing that? And whatever. But like, it's done in a very tasteful way. With..

 

Mai Ling  27:54

Let me let me stop you there. I'm interested in that thought process on there. So I'm feeling is like, because you're getting notoriety for this, like, why would you hesitate?

 

Rob Gorski  28:04

Well, when my wife and I split and the kids live with me, so the decisions really fall on me, but we're still parents, right. And so if there's a decision we made, I consult her on everything, just because I think it's the right thing to do. And we're still team, you know, she was less comfortable with the kids being on TV than I was. And, and so we had to kind of come up with this compromise. And it's, you know, if the kids want to do it, and I trust the people that we're working with, then, you know, we'll give it a try and see, you know, what it is, and it's been, it's been very positive for the kids. And we were on. I do a lot with ABC News. And, you know, the kids were involved in that. And, you know, the guy that we always work with, I mean, since the kids like ABC News, hats and

 

Mai Ling  28:54

Lovely yeah.

 

Rob Gorski  28:55

Just kind of like cool stuff. And they, they just, when they're talking to them, they're building them up. You know, they're like saying how amazing we think you guys are, and everybody here loves you. And you're helping so many people. And then, my it's, it's, it's a positive thing, I think, for everybody. And, you know, sometimes being able to put a face to a name. When you think autism, you think, like, Oh, my gosh, it must be impossible to navigate, like, so hard and whatever. And it's not easy. And everybody's different. And some parents have it much harder than others. And some people who are autistic have more challenges than others. But showing that, like, my two youngest, you probably wouldn't even know if you didn't know, but they struggle with anxiety and sensory things and, and stuff like that, that that does impact their life. And and can be challenging, you know, in a million ways, especially in a world where you have to wear clothes, right?

 

Mai Ling  29:45

Yes. Oh my gosh, this reminds me of the the image that I've seen a number of times, which is some disabilities look like this and it's someone in a wheelchair, someone with crutches, you know, obvious and then some look like this and it's just that stick figure person, you know, I love that. And then this comes to mind. I think we have a mutual contact Stuart Duncan (https://www.ted.com/speakers/stuart_duncan), the creator of Minecraft. Yeah. I love him. I interviewed him a couple years ago for the podcast, and then he is a coauthor in my book Becoming An Exceptional Leader.

 

Rob Gorski  30:12

O really!

 

Mai Ling  30:13

Yes. So you get to read his story of creating Minecraft. And it just brings us to mind because he had that same. And it's not it's not a challenge, but something that you have to be thoughtful of is how much to include the boys.

 

Rob Gorski  30:25

Yeah,

 

Mai Ling  30:25

You know, and he did have this wonderful. Just recently, they spotlighted them on TV and they came to the house. You know, he shared that all on social media. And I'm sure that everybody who sees that is just absolutely thrilled for you. You know, I mean, I was I was going right along with it. He was getting us excited. They're coming to the house. And then they came, and we were all a part of it with them. And I just want you know, from my side of it, it's I think it's wonderful. And but yeah, I also see that you have to be careful, you know, because it's children in the in the spotlight, but I'm so happy for you.

 

Rob Gorski  30:55

Well, thank you, Stuart, actually, when you when you bring him up, he is he's one of the people that helped me get started. He went out and purchased the Lost and Tired domain, lostandtired.com when I was still doing like a wordpress.com thing. He purchased the domain, he transferred it to me. I didn't know any of this. He did it just because he wanted me to keep going. And he transferred it to my name, which was just amazing. And then he hosted the blog for the first couple of years. Like for free just just

 

Mai Ling  31:24

On his server...

 

Rob Gorski  31:25

Yeah, he's he's an amazing guy. And we've sort of lost contact. Really?

 

Mai Ling  31:31

Okay, Stuart reached out now.

 

Rob Gorski  31:32

Yeah. I talked to him every once in a while. He's he is he's, he's such an awesome guy. And he's been through a lot.

 

Mai Ling  31:41

Yep.

 

Rob Gorski  31:42

You know, and he and he always persevere. And there's sort of a core group of dads that kind of started out like this. And Stuart and I are one of them. And Joe Mann's there's another one. And Tanner's dad's another one. And then everybody, you know, life sort of happens, and everybody gets spread kind of thin, I think and, and you just sort of lose, lose touch.

 

Mai Ling  32:03

But see, I find them Mai finds them and brings them together on the podcast. Yay. That's fantastic. Yeah, we do we have our own little community, you know, and it is internationally niche. So, you know, I'm finding that people know each other from other countries now. And it's just beautiful.

 

Rob Gorski  32:19

Yeah, there's no boundaries, because because you're dealing with zoom. Well, now, because COVID are dealing with zoom. When you're dealing with Facebook, you're dealing with Twitter, or just a blog somewhere. I have no idea where where some of these people are. I just know there are people who are dealing with the same thing. And then I'll find out Oh, well, they're in Scotland or something.

 

Mai Ling  32:34

Yeah.

 

Rob Gorski  32:35

And so there's no, there's no, there's no international boundaries. It's just people in the same community, helping each other and then trying to raise awareness to make the world a more inviting place for the people that we love and care about. So it is a it is a hugely positive thing.

 

Mai Ling  32:50

It's amazing. Now you've done such a great job of being transparent about your journey as the autism dad. And I'm gonna ask you this as a mom, who has older children. So you can see me on zoom now, and I know people see me I know, I look younger than I am. But I have kiddos that are 24 and 21. Yes. Yes. And so they've flown the coop. And so I want to ask you Rob, what happens when you're no longer the autism Dad, you know, doing this day and day, getting them off to school, and you know, what's life like after that,

 

Rob Gorski  33:22

I'm just hoping to get to it um, where I can do that. You know, I haven't really thought about that. My, my goal has been to turn this into like a foundation, that's my dream is turn it into a foundation, where even after like the kids are up and out of the house, whatever, that I'm still able to use my experience to help other people because there's always going to be people coming behind us. And if if the people that come before us, you know, like the path, then it's, it's easier to navigate. Our kids do better because we can avoid some of the pitfalls or learn from the mistakes that we made. You know, when we were learning for the first time and, you know, I mean, gosh, I don't know, I want this to be something that, like my kids will always say if you ask my oldest, he says he wants to work for me. He wants, he wants to work for the blog, is what he says. And, and I mean, you know, we've talked about like him doing his own, like series of posts, or he used to like doing a lot of videos. He's schizophrenic, right. And so he he's been unmedicated since COVID. And he's better than he's ever been. So we're not quite sure what's going on there. But it's good thing. But he used to like sharing his, he called the missions that he would go on, but they were they were schizophrenic hallucinations. And he wanted to sit in front of the camera and tell people about his things because he was a superhero. And he was helping people and also the stuff and I thought like God, I don't know, like, if I I don't know how people will take that. I don't want him to read comments. And

 

Mai Ling  34:54

Right. Oh my gosh, there's so much negativity out there. Oh my gosh, and I'm seeing your face. So we're doing this on zoom. I'm seeing Rob's face and I'm just like, oh as a parent? Yes. How can you protect them from everything.

 

Rob Gorski  35:04

But you know, we don't really, we don't, have done in a long time. But the response that he got was really positive. Like, people were asking him to please write a book like, like, take these stories, because they sort of continue off of the other sports like one big, like, series of events that are all sort of chronological, and, you know, he's he's

 

Mai Ling  35:26

Yes it is fascinating Rob. O my Gosh.

 

Rob Gorski  35:28

Positive thing.

 

Mai Ling  35:29

Yes. Yes. So did you see what how we digress? Right there. We were talking about you and what you're going to do? Oh, yeah. Isn't that what parents do, though? I know.

 

Rob Gorski  35:38

Yeah. I always struggle with that. What am I gonna do, I want to, like I can build off of this and do other things like with the podcast, you can, you could take slightly different directions, you can start including different things, and maybe kind of grow into a different niche. But you know, what the site I think, I don't know what'll happen. I mean, there's, there's always going to be value to it. Because whether you're even a parent for 10 years, or you're just dealing with a child who was diagnosed, the blog goes back to like, 2010. There's a lot of years of, of our day to day experiences, and the specialists and all the things that we went through, that'll still be relevant to people, I think. But I guess if I can, if I can capitalize on on that, and use it in a way that that can help people in real life, I would want to figure out a way to keep doing that.

 

Mai Ling  36:32

I love that. And thank you for going along that journey with me, Rob, I think that it's really important to look forward. And you know, people get that empty nest syndrome and people who have children with disabilities, that life looks a little bit different. But you still should be looking towards that, you know, when you're just Rob, you know, not somebody's Dad.

 

Rob Gorski  36:46

Yeah,

 

Mai Ling  36:47

Alright, well, how do we stay in touch with you and keep up with all of these things that you're doing?

 

Rob Gorski  36:51

Well, I try to make it as easy as I can. If you just go to theautismdad.com, there's access to everything, right there. All my social tags, or like Twitter and Facebook, it's all theautismdad or just Rob Gorski or something. So it's pretty easy. All the links are on the page on my site. So

 

Mai Ling  37:08

Excellent. Do you have anything coming up like in the next couple of months here that we should be watching for,

 

Rob Gorski  37:13

I have something really cool with Elliot, coming up, he's gonna be recognized for some of his photography, by a phone company that produces his his favorite phone. And we're working on that actually, now. And that's supposed to sort of be tied with Autism Awareness Month, I have someone from St. Jude, and will Health Organization coming on to the podcast next week, to kind of talk about COVID and sort of where we are, and you know, what we need to keep doing right and all that stuff. And then I have the Cleveland Clinic coming on their autism clinic to kind of give parents you know, information on what to look for when to be concerned, what not to be concerned about, where to go for help, how to get help, how to navigate all these, you know, scary things in a moment. And, and hopefully, those will be positive things. And I just talked to a lot of parents and they bring parents on, and meet them for the first time and kind of introduce everybody and make connections with people. So

 

Mai Ling  38:07

Excellent. Well, this has been wonderful. I'm so glad that I made the connection with you. I know I Facebook stalked to you like I love to do and you said yes. So thank you. And I look forward to watching all the things that you and your family are up to.

 

Rob Gorski  38:18

Thank you very, very much.

 

Mai Ling  38:21

Thanks so much for joining us for this episode. And I invite you to connect with me directly at mailingchan.com. We also want you to let us know what you think about the show, ideas on how we can continue to help you or referrals to a great guest through our Facebook group at Exceptional Leaders Podcast or email us at xleaderspodcast@gmail.com.

 

Martyn  38:42

Yes, Mai Ling, I totally agree to that.  I know we're both really mission driven people. And for me, it's always been this big mission to have a world that's fully inclusive for all people. And in the end, that's probably why we've bonded and come together so well on this podcast, Xceptional Leaders Podcast(https://podcasts.apple.com/us/podcast/xceptional-leaders-with-mai-ling-chan-martyn-sibley/id1435433350),, because we get to meet cool people, give them a platform to share their story, and really just make such an impact in the disability world. Love it. Also, for everyone listening please do head over to disabilityadvisors.com This is the magazine that I co-founded about 10 years ago. We've got a free mailing list there for all the latest article, news, and discounts for the shop if that's your kind of thing. And definitely definitely do get your copy of Becoming An Exceptional Leader book. We want you to get as much information as you need and to be as successful as you can be.

Rob Gorski

I'm a single Dad to 3 amazing kids who happen to fall in the autism spectrum. I've used my experience over the last decade to help others walking a similar path. I'm a multiple award winning blogger, public figure, advocate and influencer. Oh...and I have a podcast.