016 – Rob Gorski Father of Three Boys With Autism & The Autistic Dad Blog & Website.

Transcript:

Dad To Dad 16 – Rob Gorski Father of Three Boys With Autism & The Autistic Dad Blog & Website.

Rob Gorski: This is the Special Fathers Network podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org.  That’s 21stcenturydads.org.

David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network podcast stories of fathers helping fathers.

Tom Couch: And I’m Tom Couch. Today, we’ll be featuring a series of conversations. David Hirsch had over the last few months with the autism dad, Rob Gorski, Robin, his wife, Liz, our parents to three special needs boys.

Rob Gorski: His challenges is going to be hardships. There’s going to be infinite amount of sacrifice that you’re going to have to make. But the rewards are so profound.

Tom Couch: Rob writes honestly, of his parenting experiences, both positive and negative on his website, theautismdad.com.

Rob Gorski: I started writing it as a means of coping with everything.

We try to live our lives, the best that we can in the circumstances that we’re in. And we teach our kids to do the same thing.

Tom Couch: Here’s David Hirsch.

David Hirsch: Being a father is very important to me. Being a good father means being a successful role model for your child, helping them be happier, more fulfilled and productive members of society.

I’ve started a number of charitable organizations designed to increase the role of fathers. One of them is special fathers network. As a dad, to dad mentoring program for fathers, raising children with special needs, we’ve been interviewing some exceptional fathers of special needs kids, and we want to share their stories with you.

Tom Couch: These conversations took place over several weeks and we’re featuring them for you now. So here’s David Hirsch’s conversation with the autism dad, Rob Gorski.

David Hirsch: I’m thrilled to be talking today with my friend, Rob Gorski from Canton, Ohio is also known as the autism dad. Rob, thank you for taking a few minutes. Do a podcast interview for the Special Father’s Network.

Rob Gorski: Thank you for having me.

David Hirsch: You and your wife. Liz are parents to three boys, Gavin, 18 Elliott 11 and Emmett nine. All of who have autism and have a number of other serious health issues. Thank you again for agreeing to do the podcast interview. So to get started, um, for a little background, where did you grow up?

Tell me something about your family and your siblings.

Rob Gorski: Uh, I grew up in Canton, Ohio, so I’ve, I’ve born and raised here. I’ve never escaped, I guess everybody’s always wanting to leave, but you know, I got to stick around. I am actually the oldest of six, four boys, two girls. And, uh, everybody lives with the exception of my, my one brother lives about, you know, half hour, 45 minutes away.

We’re all within a few minutes of each other.

David Hirsch: Wow. That’s pretty amazing.

Rob Gorski: Yeah, it’s been, it’s been nice having everybody close by.

David Hirsch: How would you describe your relationship with your own dad?

Rob Gorski: Um, my dad and I are very much alike, uh, growing up that didn’t always. Mesh well, um, you know, when I’m a teenager wanting to assert myself and whatever, we, we, uh, we’re, we’re very much personality wise alike.

And so there was some, you know, conflicts and stuff there, but, you know, as, as I got older, you know, my dad and I have a really, really good relationship, you know, I, I can call him for anything. You know, he’s always he’s there and he’s always there for all of us really, but it’s, it’s a very positive, very positive relationship.

David Hirsch: Excellent. So your dad is still alive.

Rob Gorski: Oh yeah, yeah. Yeah. My mom.

David Hirsch: And how old are your parents?

Rob Gorski: Early sixties? My mom just turned 62 already on February 2nd.

David Hirsch: So thinking about your dad, is there anything that he said or he did by his example that sticks in your mind as far as the main message about importance of things or being a dad?

Rob Gorski: One of the things that I remember, you know, we never had, we never had a lot of money growing up. I still don’t have a lot of money. My dad works. I mean, he would work two or three jobs sometimes just to make ends meet, never complained, never made it look like it was difficult for him. And that was something that I didn’t really appreciate when I was younger, but as I had sort of come into my own, I, I recognize.

The amount of effort and sacrifice on his part, making sure that everybody had what they needed. That was something that I’ve, I’ve always really clung to, you know, is I became a father of my own. So if I

could paraphrase what you’ve said, Rob, it was his work ethic and his actions speak louder than words.

He wasn’t, you know, saying how hard or difficult things or challenging things were, but he just did what needed to be done.

Yeah, his, his, his pure devotion to our family and everything that he had to do in order to provide for us was, was pretty awesome.

David Hirsch: So, uh, let’s talk about, uh, schooling. He went to high school there in Canton.

Rob Gorski: Uh, yeah, it was it’s a little North of Canton.

David Hirsch: And, uh, what did you do after high school? Well,

Rob Gorski: after high school, I went to college at Walsh university. Okay. I was going to school for forensic psychology. Probably my second year, there, there was a gap between classes that I could take. And so I thought I’d fill the gap and take like an EMT class because I wanted to sort of bolster my resume.

My goal is to be an FBI profiler. Really? Yeah. Yeah. I thought, you know, being an EMT and having emergency medical training would be a positive thing, you know, I did that ended up joining the fire department and. Never looked back. I sort of found my calling and I did that for a long time until I suffered a back injury right before September 11th.

And, uh, that was sort of the point in time or where my career sort of started going downhill because I wasn’t so much pain all the time. And so I had to retire from that.

David Hirsch: And have you held any jobs and the ordinary sense of the word since then? Or what have you done to?

Rob Gorski: Yeah, well, I’ve been self employed since then.

I owned a small contracting company that did a lot of work with a major residential home builder on the East coast. And I did that for permanent 10 plus years, I guess. And then as things deteriorated with my oldest and in my wife’s health started. To suffer. I had to find a new balance and that required me to become a stay at home work at home.

Dad, you know, I sort of ran the office out of my house and I had a couple of my brothers actually in a couple other people working for me. And it eventually got to a point where things are so difficult at home that I just, I didn’t have the time to keep up with anything, like shut my business down and spending more time at home.

Because the needs of my family changed. It became one of those things where, you know, my wife was not able to handle the behavioral challenges that we were facing with our oldest at the time. It was really bad for, for a long time. And, you know, we had to make a choice of, you know, do I work outside the home and sort of leave her to deal with that so that we can be more financially secure or, or do we team up and, and just.

Focus on. What’s absolutely the most important, and we chose to sacrifice financial stability for the ability to make sure that our, our kids got what they need throughout the day that each one of them is a full time job. And you know, some of the behavioral issues that Gavin was, was dealing with when he was younger, were.

They were pretty devastated. You know, we were actually looking at having to do residential placement at a point in time and not working outside of the home, creates a lot of problems financially, but it was the right thing to do. If I had to do it over again, I would make the same choice.

David Hirsch: So your connection to the special needs community started.

When Gavin was diagnosed with autism. So go back to that time when you and Liz learned that, uh, Gavin had some challenges and just tell me what that was about.

Rob Gorski: Well, Kevin was diagnosed with autism back in 2005.

David Hirsch: So how old would he have been then?

Rob Gorski: When we received the diagnosis? Oh, he would’ve been five cause he was born in 2000.

So about five years old. Okay. Gavin sort of a unique case because there were, there were sort of extenuating circumstances with him that could have been responsible for some of the behaviors that he had. But what, when we got him evaluated, you know, it ended up being an autism diagnosis. I mean, I only heard the word handful of times in my life.

I didn’t really know what to expect. You know, I always thought putting a name. To a disorder or to a challenge that we’re facing would make it easier. And it really didn’t. Oh, well, Gavin suffers from a form of autism called childhood disintegrated disorder,

David Hirsch: childhood disintegrative disorder,

Rob Gorski: childhood disintegrative disorder.

It’s extremely rare, like extremely rare. There’s almost no research. There isn’t really any research on it. There, there, there aren’t that many documented cases. And what happens is he developed typically until you’re about three or four? And then all of a sudden things change. It feels like it was overnight, but in reality it was, it was over a period of time.

But as he gets older physically, he doesn’t really get older emotionally. And, and so there’s a huge gap between 18 year old, Gavin and six or seven year old Gavin on the inside.

David Hirsch: So, uh, Gavin, uh, was, uh, five years old when, uh, the diagnosis was made. And that would have been before Elliot was born because there’s seven years between the boys.

Um, and then you have a second child. Yep. Elliot he’s also been diagnosed with autism. From what I understand, correct. At what age would that have been Elliot?

Rob Gorski: There’s about two years difference between the two. We were, we were pursuing a diagnosis for Emmett actually first because Emmett was nonverbal.

Uh, at the time, you know, he didn’t respond to noise or anything like that. And they were, they thought he was deaf. Uh, it turned out that he was autistic and they were just, he was filtering out his surroundings about the time that we were sort of on the tail end of getting Emmett diagnosed. We started noticing issues with Elliot.

And so we had him evaluated as well. And by the time both processes were, were done. They were both officially diagnosed with autism. Elliot was in preschool. You know, Emma was much younger. Emma was two or three, I think when, when he was officially diagnosed. And that was, that was really tough. That was really tough.

Well, our parents joke a little bit about, uh, when you have your first child you’re, um, two on one, and then when you have your second child, it’s. Man to man, you know, as far as defense is concerned. And then when you have more children, like you have three boys, it’s the three of them and the two of you. So now you’re in a zone defense and your zone defense sounds a lot more complicated than anybody else that I know, you know, on a three to two, um, up and I’m not sure.

David Hirsch: How you and Liz have handled all this over the last decade. But I remember, I think you telling me, or maybe I read it someplace that at one point Liz had a breakdown and like had, had to move away. You separated for some time. Is that the situation?

Rob Gorski: Yeah, she, we didn’t, we, we were so tunnel vision on doing whatever we needed to do for the kids that we stopped taking care of ourselves, our marriage, and.

You think the right thing to do is to always put your kids first and you have to find a balance. Uh, what happened with, with Liz was she suffered from caretaker, burnout, and, and that’s where you sort of give so much of yourself that there’s literally nothing left to give you. Just shut down. We ended up going through a separation for about two years, everything, the kids on my own, she lived with her parents.

It took, it took two years for to get back on her feet. You know, we now realize that we have to prioritize ourselves, you know, when you have to be selfish before you can selfless. And so in order for us to be the best tracks we can be, we have to take care of ourselves individually first. And then we focus on marriage because we’re better parents together.

And, and that that’s, that’s something a lot of parents struggle with and then realize until, you know, the marriage falls apart or they start suffering these health problems.

Well, the phrase he used was being selfish before becoming selfless. And I think that that is something that, uh, is a really important message for parents, not just dads, but both moms and dads to be aware of so that they don’t get to the breaking point.

Like sadly too many marriages end in divorce, 50% of the overall population. And that testimony would be 75 or 80% for those raising kids with special needs. And I. Uh, this is the message, right? This is the central issue about not taking care of yourself, not focusing on your relationship with your spouse.

And then all of a sudden it’s like you pass the point of no return and you just break up, right. You just end up going in different directions and who suffers the kids. Right. If there’s only one parent, there it be. Handling things on a day to day basis.

David and Rob’s conversation and resumed several days later with David asking just how it was that Robin, his wife, Liz were able to cope with having three special needs kids.

David Hirsch: In addition to the episode that we just talked about with your wife’s health and then getting the family back together, what are some of the bigger challenges that you and Elizabeth faced?

Rob Gorski: Oh man, well dealing with some of the health issues that the kids have is, is it feels insurmountable at times, you know, specifically with our, with our oldest, Gavin, he just turned 18. And the health issues that he has are exceedingly rare and there’s really very little out there to, to help nothing is curable.

We’ve had to come to grips. With the fact that, you know, he’s never going to get better. And the reality is that as we go forward, he’s only going to get worse.

David Hirsch: So just to be clear, Rob, um, each of the boys has autism, including Gavin. What are his, uh, health issues or what are his primary challenges?

Rob Gorski: I want to say about six, seven years ago now.

He started having health problems for the first time inside of a, of a window of about a year and a half, when he was diagnosed with epilepsy, uh, he lost his immune system. He has something called common variable immunodeficiency. Basically his immune system is, is defunct and it doesn’t work. And so he has to receive, uh, donor antibodies, uh, twice a week through infusions in his stomach.

He was also diagnosed with a very rare autonomic disorder. They don’t really have a name for it because they don’t really know for sure what it is. You know, out of nowhere, his brain will just stop controlling his autonomic functions properly. So, you know, you could be just sitting, watching TV and then all of a sudden this blood pressure will crash and he passes out or.

Know, his, his body temperature won’t regulate properly. So he’ll either overheat or he’ll be too cold. He is physically incapable of sweating, so he can’t cool himself off properly. So we have to always watch how the temperature around him, you know, you know, his, his heart rate is not properly managed by his brain.

And it’s, it’s scary because there’s, there’s no cure for it. There’s no treatment for it. Mmm. It’s basically supportive care when a crisis happens. Mmm. And when a crisis happens typically in the past, and it’s been a few years since he’s had a major crisis, which is, Hmm. Really good, same. Uh, but every time it happens, they have, they have no way of knowing if he’s ever going to pull out of it.

David Hirsch: So, uh, if you had one child with autism and health issues, that would be like a fulltime challenge?

Rob Gorski: Correct.

David Hirsch: Yeah. But you don’t have just one, you have two other boys who also have autism and health issues of their own isn’t that right?

Rob Gorski: Um, yeah, they, they each have, um, unique challenges.

David Hirsch: So how would you describe Elliot’s um, situation

Rob Gorski: Elliot is. Um, his, his biggest challenge is anxiety related and sensory processing related. You know, he’s, he’s crazy smart. You know, he gets along really well with his friends at school. They’re in a, they’re in a special school for kids with autism, but you know, he’s very, very high functioning, but the anxiety that he experiences.

Can be crippling for him in a lot of ways. He worries about everything and everyone sort of carries the weight of the world on his shoulders. He has matured in a lot of ways, faster than a lot of the other kids in his class, you know, emotionally he’s in a different place than a lot of his, his peers are.

And that tends to lead to. You know, some struggles and, and, and things along that line, because he, you know, kids are kids and, you know, I mean, kids can be jerks, whether they have special needs or not, you know, I mean, it’s just how kids are.

David Hirsch: Absolutely. You know,

Rob Gorski: and he tends to take everything to heart and doesn’t realize that, you know, they’re just being kids, you know, so it’s, it’s kind of a daily struggle and in that, that area, but, you know, thankfully he, you know, aside from asthma, He hasn’t really had any significant health issues that have made, uh, you know, a complicated situation, more difficult.

David Hirsch: And you have a third son, his name is Emmett.

Rob Gorski: Yes. Emmett,

David Hirsch: does he have any additional challenges, health wise or otherwise?

Rob Gorski: Yes, he does. Actually. He has a, it’s a very rare, uh, fever disorder. Um, it’s called . That’s the acronym. It’s basically an idiopathic periodic fever disorder. And what happens is for some unknown reason, he runs fevers all the time.

Uh, it used to be on a cycle where he would, he would have a feeder for roughly 10 days, and then it would be about two weeks off and it would come back and he’d run a fever for 10 days today. Like for example, this week, He missed school this week because he started into another finger cycle. And now what happens is a low grade fever.

He gets mouth sores that cover the inside of his lips. And his is his tongue in his mouth or his cheeks nigga down his throat.

David Hirsch: Oh my gosh.

Rob Gorski: You know, he doesn’t, he doesn’t eat he’s miserable. He can’t sleep. You know, that, that interferes with a lot of things and going to, because he runs a fever all the time.

You never know if he’s actually sick or if it’s just the fever from the fever disorder. And, and so that’s sort of butts heads with the schools, feeder policy. It’s an ongoing struggle to where we’ve considered resorting to homeschooling in some fashion, uh, because we’re really struggling to keep school moving forward.

He does great in school. He’s the highest in his class, you know, he’s, he’s actually. Learning about a grade ahead of the grade that he’s in. And so, you know, academically, he’s not impacted by that, but, but it’s still preached problems with, with truancy laws and, you know, things like that. And in one way, shape or form, it impacts us every day.

And then, you know, his other biggest thing or his anxiety and sensory processing, like, like his brother, you know, Emmett struggles with clothes. And food textures, things like that. And he hasn’t worn socks and regular shoes. And probably two years he wears Crocs barefoot. We finally got him to at least do that, but it’s, you know, on a good day, it’s hard to get him dressed.

And on a day that he’s miserable because of the pain in his mouth or something. It’s, it’s impossible.

David Hirsch: So there’s three of these boys. Common theme is autism, but they have demanding other needs. In addition to that. And there’s only the two of you, how do you cope? Yeah. Do you have a strategy that you trade off or does one of you is the primary or one of the boys and the other of you is the primary for the other two.

What is it that you, you Elizabeth cover that works for you?

Rob Gorski: Uh, you know, I wish I knew the answer to that because. I’m not always sure how we’ve made it this far. We, we, we put the kids first is often as we can because we talked to them before you, as parents, we have to take care of ourselves too. You know, there are times where, you know, we have to sort of take turns and there is like sleeping, for example, you know, Emmett struggles sleeping at night a lot of times.

So one of us is usually up with him because of my wife’s health related issues. A lot of the responsibility falls sort of disproportionately on me. We try and find some kind of balance as best we can, but you know, what makes this so challenging and this the same thing for a lot of families with autistic kids, it’s such a dynamic fluid situation that every day can be different from the previous day.

And what may have worked this time may never work again. And so it’s, it’s, it’s constantly having to try and think outside the box and come up with creative ways of resolving issues that have no simple solution.

David Hirsch: Uh, so let’s use this as a segue to talk about, um, one of the coping skills that you described to me that you started journaling and writing as a way to Mmm.

Overcome some of the challenges though. When did that start and what value has that been to you?

Rob Gorski: I started writing, I spent about 10 or 12 years now/

David Hirsch: that long.

Rob Gorski: Wow. It’s been, it’s been awhile. Yeah. You know, w when we first started working with Gavin’s diagnoses, when he was first, he was diagnosed in 2005.

And my wife suggested that, uh, I start writing like in a journal. And I’m a tech guy. So writing with a pencil with paper is not something that I enjoy doing. So she helped me start a blog and I just started, honestly, it was, it was, it was basically just word vomiting, everything that I was feeling in the moment.

And, and I just, I hit publish and I walked away from it. I didn’t know anything about social media because there really wasn’t a whole lot of it back then, but. It was therapeutic for me because I didn’t carry all that around with me. I could say what I needed to say, be as brutally honest as I want it to be and, and walk away from it feeling like I had dealt with it and then put it, put it, put it down.

So I’m not carrying that weight. And I don’t know how people started finding it, but what they did and. You know, I was saying a lot of the things that people were feeling, but were uncomfortable saying themselves and, and it just sort of took off, uh, from there. Um, you know, and, and I

David Hirsch: give you an example early on Rob, but something that you wrote that, you know, people found like, Oh, you really resonated with them.

Was there something. Early on. That was a catalyst, something that you were brutally honest with yourself about, that others could relate to. That would be a good example of what you were just describing.

Rob Gorski: Yeah. You have a special needs child. You’re supposed to have an infinite level of patience. You’re never, you know, it’s, it’s a horrible thing for you to yell at your child because they have special needs.

Yeah. You should never lose your patients. You’d never lose your cool. You should never have resentful feelings because. Then being autistic or having health issues, isn’t, isn’t their fault. You know, they didn’t choose this and they’re certainly not trying to be a problem or be frustrated. But the reality is that they, it still impacts me as a person that way I tell people all the time my kids drive me crazy.

I mean, they got, I love them to pieces and I would do anything for them, but they drive me crazy and it’s okay to admit that. Do you get, you got two sides that you get people who criticize me for saying things like that. You should never say stuff like that. It’s terrible. Then you have the other side that, that are saying like, Oh my God, I feel the exact same way.

I didn’t know. It was okay to talk about that. And it’s okay to talk about anything. You know, you can feel resentment, you can feel the anger or whatever you want, whatever you need to. It’s what you do with those feelings. That matter. One of the things that I stress with, I was calling my parents, but like the families that follow me around the world, you’re only human.

And you, you were a human being who is charged with a job that requires superhuman abilities, you know, so you have to cut yourself some Slack, you have to recognize you have limitations, emotions are something that’s inherent to human beings. You’re going to feel whatever a situation makes you feel. You have no control over that.

It doesn’t mean you don’t love your kids. It doesn’t mean that you’re a terrible parent because you’re angry or resentful at behaviors that your child is exhibiting or something. And so that was, that was something that really resonated with people. It’s sort of polarizing to an extent, but it was something that really brought people around because they could relate to what I was experiencing, because it’s what they experience every day as well.

I just encourage people, you know, talk about it, you know, don’t, don’t let this stuff fester because it’s not going to do you any good. If you’re going to you, you beat yourself up for feeling frustrated or angry. It just feeds the beast. You know, if he comes toxic, you know, write about it, talk to somebody.

Therapy is a godsend for families like mine.

David Hirsch: When did this morph into more than just you writing for your own benefit, realizing that maybe there’s a bigger purpose here?

Rob Gorski: Well, my first blog was called lost and tired people really found that either hated that name or they loved the name. And to me, I thought it was perfect because at any given point, if any given day I am either feeling lost or tired, I’m always tired.

And most of the time I have no idea what I’m doing. So I I’m lost. I mean, the blog became popular within, I guess a few months when we started to write, there was, there was a really powerful situation that happened. Well, I wrote an article for CNN health. About an experience that I had with a homeless person at a grocery store.

It was a situation where I witnessed people being very cruel to somebody who very obviously had challenges. You know, you know, the person was not doing anything wrong. He was, he was trying to help them. And he was laughed at that. They almost ran him over with their car and it was, it was a very powerful experience for me because when I looked at this guy, I saw Gavin.

Because Gavin is so awkward around people. He means well, but he’s extremely awkward. And I could see the same thing happening to him. And no, I came home and I, and I spent the next couple of days trying to put my thoughts together because it, it, it really shook me to my core. I wrote an article just, just for my blog.

And that was the first thing that I ever wrote that went viral. Ended up getting picked up by CNN and then that sort of exploded the amount of people that could see it,

David Hirsch: you know? So that was a catalyst for communicating with a much wider audience. That’s what I hear you saying.

Rob Gorski: Yes.

David Hirsch: Did you brand what you’re doing as the autism dad back then?

Rob Gorski: The autism dad started shortly after my wife and I separated. I decided that it would be best to put that part of our lives behind us and start. What’s something new. That would be my story. Like, because it was me, the boys, I was raising the kids on my own. And so, you know, I came up with the autism dad because I thought that was more fitting.

I thought it could be a more positive approach things, you know, I, I focused a lot dealing with being a single parent with this kind of thing, and then navigating the dynamics of at the time we were going to get divorced, navigating that in, in a, in a positive way so that, you know, it doesn’t impact the kids or it doesn’t.

It has as little impact on them as possible. If that makes sense. I don’t know if I will have that. Right. I started the autism dad on it was August 1st of 2015. So it’ll be three years. This summer. It’d be three years this summer.

David Hirsch: So what is that when you say that, um, you’re the self proclaimed autism dad.

Is that a blog? Is it something beyond that?

Rob Gorski: I thought it sort of describes who I am and what I write about. I’m an autism dad and. It sort of lets people know going into it, what they’re going to read about, you know, I could be a resource for people and that’s, that’s sort of my ultimate goal is I want something positive to come out of the struggles that, that I personally deal with everyday, whether it’s my own demons or dealing with things with the kids or marriage or just everyday life, you know, that’s, that’s one of the ways that I maintain my sanity is by using my experience to try and help others.

Because I know what it was like to go through this with no guidance. And I’m hoping that if nothing else, people realize that they’re not alone, that they’re not the only ones that are going through this, you know, most of the time, it’s just people just saying that they’re so thankful to know that they’re not the only ones going through this.

I’ve had grandparents reach out to me and tell me that until they read my blog or watch some of the videos I have up on YouTube. Dealing with what a meltdown looks like in real life. They had no idea what their kids were going through. You know, they had like an autistic grandchild. They were sort of of the opinion that it was a lack of discipline or it’s something that they’ll outgrow.

And it is, it’s not like a discipline. It’s not something they’re going to outgrow is something that requires education and compassion and an understanding that things aren’t going to be the way that you want them to be, but embrace them for what they are. And, you know, they had their eyes opened and they were, they’ve become, they found ways to be more supportive to the autistic kids in their own life.

And that’s, I mean, that’s like a huge thing for me because that feels like I, I make a difference, you know, in everything that we’re going through is helping people. And so it kind of gives you the strength to get up and keep going.

David Hirsch: That’s fabulous. So what’s the most important takeaway or takeaways that come to mind?

If you’re giving somebody else advice, even though I know you, don’t like to give advice about raising a child with differences.

Rob Gorski: You know, the two, the two big pieces that I tell people, number one, like we talked about before, you have to take care of yourself. It’s almost instinctual to put every ounce of everything you have into your kids because they need that.

Right. The problem is, is that you can’t sustain that. And you’re setting yourself up to fail. Your kids need you for as long as you could physically be around. If you don’t take care of yourself, you’re not going to be able to meet the needs that your kids have. And it’s like, we talked about, you gotta be selfish to be selfless.

They use the analogy a lot. Like when the oxygen mask comes down on a plane, you’re instructed to put your own mask on first, before you put it on your kids, because if you can’t function. You’re not going to be any good to anybody else around you. So I always tell people to focus on taking care of themselves.

And then the other thing is you have to learn to trust your instincts and trust your gut because personal experience over a long time tells me that nobody is going to always agree with what you’re going to do, because they just don’t understand why you’re making decisions that you make for your kids and why it’s best.

So you have to just trust your gut. I tell parents a lot of times when they’re especially like newly diagnosed kids, when they’re trying to learn from their doctors or they’re trying to find out what they could do for their kids, you know, your child better than anybody else. If you feel something’s wrong, something’s probably wrong.

And, and you need, you know, fight for that. Don’t let someone just blow you off or whatever, just push it till you get where you need to get, because you’re your child’s voice. You’re their advocate. And I guess that’s, those are, those are those, those are the two big things, you know, don’t get pushed around.

Let’s do what you know is right. Regardless what everybody else thinks and take care of yourself.

David Hirsch: So I’m thinking along advice, uh, not sort of openly about raising kids with differences, but now specifically with dads. Uh, who are raising a child with a physical or intellectual disability or both for that matter, any specific advice you could offer a dad, a young dad who’s maybe at the beginning of his variance, raising a child with special needs.

Rob Gorski: You know, one of the biggest, and I think it hits dad’s a lot harder than it does other people, but when my two youngest were born, you know, you have this vision in your head about what.

Life is going to be like you. A lot of us think like, Oh, it’s going to be like football games, baseball games, basketball games, whatever. When you find out that your child has special needs, like your entire world, it feels like it just imploded because you don’t know what it means for one thing. And then everything that you’ve planned out in your head, it has just been torn away in my experience.

And it’s unfortunate, truly unfortunate. It’s I think it’s this moment that sort of dictates whether the dad is going to embrace the new situation and adapt, you know, as opposed to maybe no longer being around, because I I’ve seen that way more often than what it should be. If you can be open minded and give it a chance, you know, understand that it’s not going to be the way that you thought it was going to be or the way they had it planned.

No idea how awesome it still is going to be his challenges. There’s going to be hardships. There’s going to be an infinite amount of sacrifice that you’re gonna have to make, but the rewards are so profound. You know, every accomplishment is like, sometimes it feels like a miracle. My, my son’s wearing pants today.

He’s nine years old. I mean, to me, that’s a victory. I look at that and I think, Oh man, I’ve done something right. But. You just, you have to let go of what you thought they were going to be like and allow yourself to embrace whatever’s coming.

David Hirsch: Oh no, the message I heard loud and clear was that you need to embrace the situation and adapt.

And it seems more obvious that if you have a child with special needs with autism in particular, that that’s good advice. But I think that’s just good advice. Prob. For anybody. Yeah. Right. Cause we’re all going to have situations that don’t go as planned. Right? What, you know, some people joke and call it, plan B or plan C.

And for those that are rigid and very black and white about things, it’s very tough. It’s very challenging. And sadly, you know, if it’s talking about being in a relationship or being a parent. Sometimes it looks easier to push the eject button and move on.

Rob Gorski: Exactly.

David Hirsch: I just need to get out of this situation.

The grass has got to be green or someplace else, and that’s a very shortsighted way of thinking about it.

Rob Gorski: Yeah.

David Hirsch: So no, each of us is going to have challenges. They’re just going to be different types of challenges and you know, it just really is a path I think. And testimony of your commitment, uh, who your spouse or the mother of your children from the dad’s perspective.

And then do your children and, you know, they really need you. They depend on you in so many different ways. I think about it as being there, physically being there, emotionally being there spiritually and Oh, by the way, you know, they could use the financial support to.

Rob Gorski: Yeah.

David Hirsch: It’s just a fabulous insight.

Thank you for sharing it. Um, is there anything that I’m going to drill down on this one more level? Mmm, nice, specific advice that you can provide. The dads or parents about helping a child with disabilities reach their full potential.

Rob Gorski: You know, one of the things, our youngest, Emmett, he didn’t talk for the first four years of his life.

And we were told that he was non verbal, that he would never talk, you know, so we started teaching herself, sign language, teaching him sign language, because it didn’t occur to us at the time that doctors could be wrong. I mean, how, how does, how can, how can they see the future? And there’s no litmus test or blood test is ever going to talk.

We continue to push and provide as much stability and, and resources and support you could knowing what the doctors said is likely to be the case, but we never gave up on him and he never gave up. No now nine years old, he’s talking better than most grownups. He would never know that he he’s only been talking for a handful of years.

I guess the point is by supporting them and providing unconditional love and acceptance, regardless of the challenges they face is the best way for them to reach whatever their potential is. And it has to be their potential. It can’t be what. Where you want them to be or where you feel they should be.

It’s what’s best for them. You know, my kids, I want them to reach whatever their potential is. They may not necessarily be a predetermined level that they, they can cap off at or top off ed and you know, and so all you can do is continue to find new ways to support your kids and help them navigate life.

Despite the challenges that, uh, that they may face being autistic or, you know, having other emotional or physical health, uh, uh, things that complicate everyday life. And so just allow them to be themselves and love and support them no matter what, it may not be, you know, what you want in the end, but for my wife and I, and we decided a long time ago that.

In the end. We want our kids to be happy and healthy. And if that’s where they end up, then I feel like we’ve done. Okay. If that makes sense.

Yep. Well, what I love, what you’ve said, Rob, is that, uh, you have to redefine success. It might be different than what you’d envisioned, provide your kids with unconditional love and acceptance just where they’re at and who they are.

And that the goal, I think really for any parent, typical guns or other is to make sure that your kids are happy and healthy. Right. It’s no different than I think everybody else.

Yeah. And they know that you love them and they know that you’re proud of them, no matter how different they may be or, or how much they may struggle.

That goes a long way.

David Hirsch: That’s just great advice. Great advice. So why is it that you agreed to be a mentor father as part of this Special Father’s Network?

Rob Gorski: You know, I want to make a difference. You know, I want people to be able to benefit from the mistakes that I’ve made. I know how scary things to be, especially for dads, because they, you know, we have this preconceived notion that you have to be tough all the time and you can’t cry or you can’t show emotion or whatever.

And, you know, I would really like to be able to guide people into helping them sort of embrace the situation that they’re in and learn to adapt to that and make the best of that situation. I didn’t like feeling like I was alone or that there wasn’t anybody out there that understood where I was coming from or understood the challenges that I was trying to overcome or face.

If there’s one thing that I can do to some, for somebody, another dad specifically, I guess, is to let them know that, you know, they’re not alone in this and that there’s, there’s dads all over the world that struggle with these same things, you know, it’s okay. You don’t have to be perfect. You don’t have to, whatever.

You just have to be the best that you could be for your kid. Biggest part of that is, is sticking around and being actively involved in and doing the best that you can do. So let your kid become the best that they can be.

David Hirsch: That’s fabulous. That’s fabulous. So, uh, is there anything else you’d like to say before we wrap up?

Rob Gorski: Well, I really appreciate getting a chance to talk to everybody and, you know, I think it’s important that we all learn from each other and I’m always here. If anybody needs to reach out and talk or whatever. Yeah, they can find me@theautismdead.com and my contact information is up there. So I’m always happy to listen.

Sometimes that’s all people need is just someone to listen. I even help people get started blogging because I find it to be a huge benefit for me. Anything I can do to help make things better, what I want to do.

David Hirsch: So if somebody wants to follow up with you or support your work, they can simply go to theautismdad.com.

Rob Gorski: Yep.

You can send me a message on Twitter or Facebook or whatever. All my information is, is there and happy to help in whatever way that I

David Hirsch: That’s fabulous. So, Rob, thank you for taking the time and for the many insights, as a reminder, Rob is just one of the dads who has agreed to be a mentor father as part of the Special Father’s Network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydad.org. Thanks again, Rob. I really appreciate it.

Rob Gorski: Thank you very much. I appreciate your time.

Tom Couch: The Special Father’s Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven step. Court system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: And thank you for listening to this Special Fathers Network podcast, stories of fathers, helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio, and again, to find out more about it. The Special Father’s Network, go to 21stcenturydads.org, 21stcenturydads.org.