Our guest this week is Gus Aguilera of Oak Harbor, WA who is a cinematic special effects, IT specialist and a father of three children including a son who has Down Syndrome.
Gus and his x-wife Bobbie Jo, became teen parents and were married for 36 years, before divorcing earlier this year. They are the proud parents of three children: Cassandra (35), Jordan (27) and Gabriel (14), who has Down Syndrome. Gus has full-time custody of Gabe who is non-verbal and not toilet trained.
Gus speaks very authentically about the challenges of being a single parent, living in a remote area of Washington, with limited local resources as well as the limited type of work he is able to pursue from a professional perspective.
That’s all on this special Fathers Network Dad to Dad Podcast.
Show Links –
Email – firstname.lastname@example.org
CHOC Children’s Miracle Network Hospitals. https://choc.childrensmiraclenetworkhospitals.org
Down Syndrome Association of Orange County https://www.dsaoc.org
Washington State Fathers Network https://fathersnetwork.org
Tom Couch: [00:00:00] Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.
Gus Aguilera: There’s not one solution for one thing. You can’t apply the same concepts you apply with your other children to your special needs children, because it just doesn’t work. You have to adapt to them and what works for them, because it’s going to make your life a lot easier, and it’s going to make their life a lot more enjoyable. It’s fun. It’s fun to grow and to grow together. Very frustrating at times but fun nonetheless.
Tom Couch: That’s our guest this week, Gus Aguilera, a cinematic special effects and IT specialist, and a father of three children, including his son, Gabriel, 14, who has Down syndrome. We’ll hear Gus’s story and about the challenges of having a special [00:01:00] needs son who is non-verbal. That’s all on this Special Fathers Network Dad to Dad Podcast. Now say hello to our host and the founder of the Special Fathers Network, David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.
Tom Couch: 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 dads to support dads. To find out more, go to 21stCenturyDads. org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.
Tom Couch: So now let’s listen to this [00:02:00] conversation between Gus Aguilera and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Gus Aguilera of Oak Harbor, Washington, who is a digital effects and IT professional, a grandfather of two, and father of three, including a son with Down syndrome. Gus, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Gus Aguilera: Thank you. I appreciate it.
David Hirsch: You and your ex-wife, Bobbie Jo, were married for 36 years before divorcing earlier this year. You’re the proud parents of three children: Cassandra 35, Jordan 27, and Gabriel 14. Where did you grow up? Tell me something about your family.
Gus Aguilera: Yeah, so we’re originally from Orange County, California. Born and raised. We both are. My ex-wife, Bobbie, she originally was from Las Vegas, Nevada and moved to California at a young age and basically grew up there, went to school there, and we met in high school, so we’re actually high school sweethearts. We do have three children. Cassandra, Cassie, was our first, and Jordan, now our middle child, and Gabe, who is our [00:03:00] little special guy with Down syndrome. It’s been interesting, an interesting road, but it’s been a fun run.
David Hirsch: Let’s go back a little bit. You mentioned you’re from California, and I’m curious to know, what did your dad do for a living?
Gus Aguilera: So my dad worked for AMF. They did all sorts of stuff with baseballs, all the sports equipment and bowling balls. I think people would remember him from the bowling ball days. So yeah, so he was a basically line producer just working on the lines and doing production stuff.
David Hirsch: And if I remember correctly, he passed away about 12 or 13 years ago.
Gus Aguilera: Yeah. 2010. Yeah. Yeah. He was, I don’t know, shoot. Dad was 75, I believe.
David Hirsch: How would you characterize your relationship with your dad?
Gus Aguilera: Um, an Interesting one. [chuckles] He believes certain things and we clashed a little bit, but it was a strong relationship. I had a strong relation with my dad. We did some things, where we try to communicate and we clash a little bit, but he was always there. He supported me 110%, supported my kids. He was a great father and grandfather and yeah, we miss him dearly.
David Hirsch: Yeah. Sorry to hear that he passed at a relatively early age. [00:04:00] Any important takeaways that come to mind when you think about your dad, something that perhaps you’ve tried to incorporate into your own fathering?
Gus Aguilera: Uh, just to be there. I tend to be there in the moment when my son Jordan was playing hockey. He made it a habit to be there whether he was feeling well or not. He made it a habit to go to the games and support and do what he could just to have that… to be there in the moment for me and my son. So it’s having those memories is best for myself and for my son.
David Hirsch: Now, what I hear you saying is that he was present.
Gus Aguilera: He was, yeah.
David Hirsch: And that’s one of the most important things that dads can do is to be present. Most of us think it’s physical presence, but also trying to be emotionally present and psychologically and spiritually present as well. And it’s not always easy to do, right? Because most men are not emotional creatures. But some men find it difficult to be empathetic, for that matter.
Gus Aguilera: Absolutely.
David Hirsch: So I’m thinking about other father figures, and I’m wondering if there’s any other men that played an important [00:05:00] role in your life. Coaches, or priests, or neighbor’s dads, type of thing.
Gus Aguilera: I want to say coaches. The coaches were when I played them, I was a sports guy from a very young age. And I had a few coaches that stepped up when we were going through some hard times and just making sure that things were okay. Making sure that I’d stay out of trouble, guide me and kind of coached me even through high school and stuff like that. I was close with some, especially when I became a father at a young age. The level of respect that I had to basically decide to stick around and be a dad and kind of put everything on the back burner. And just not yeah, I guess like most typical high school fathers or kids that impregnated their girlfriends and decided to not have any part of it. So then there are several teachers that helped me with that and helped me try to be the best dad that I could.
David Hirsch: So to timestamp that, how old were you when Cassandra was born?
Gus Aguilera: Let’s see here. Cassie, she was born in [00:06:00] ’88. I was 17.
David Hirsch: Oh my.
Gus Aguilera: 16, 17. Yeah. She was born when I became a junior. I was playing baseball. I was all into sports. I was in band. My life revolved around sports. I wanted to be a professional baseball player. I was actually being scouted at one point in my life. But again, I decided not to be, I guess for lack of a better term, a deadbeat dad. So I wanted to stick around and be part of my child’s life. My mom raised me with some pretty good values, which I think I still hold to this day. And I try to live by those values as much as possible. So old Hispanic woman, just beating the stick. [ laughing]l
David Hirsch: Thanks for sharing. I have a special place in my heart for men, in most cases teenagers, who become fathers inadvertently. Oh my god, that was a lot of responsibility.
Gus Aguilera: Yeah, it really was. Now that I sit back and look at it. Responsibility for both of us. Because Bobbie was a senior in high school. I was a freshman. And when we started going out and dating, and then she graduated, and… Here I am finishing [00:07:00] my sophomore year about to become a junior and we’re having a child together, and neither one of us were prepared or knew what to do. So it was a bit of a rift with parents and she never had a very good connection with her mom. She left home at a very young age. When Cassie was born, grandma kind of stepped up to help watch her and stuff while we were still trying to figure our stuff out and figure out how to be parents. My parents were a little bit resentful, a little bit pushed back a little bit just because, again, they had plans for their son and those plans got interrupted by the choices that him and his girlfriend made. But it was one of the things where… We just went with it.
David Hirsch: Yeah thank you for being so open and transparent about that. So I’m curious to know, after high school, where did your career take you?
Gus Aguilera: Oh, wow, geez. It took me all over the place, honestly. Because I was studying to be a music major at the time. I wanted to focus on music because I loved music. I played in jazz bands and stuff like that. So I was going down that route, but then I also loved to draw. I wanted to be an animator for the longest time, and [00:08:00] I focused more on that because I got a chance to… I did my amusement park thing for a while, so I bounced around from the local amusement parks in California and Orange County. Worked at Knott’s Berry Farm, worked at Disney, but once I got to Disney, I had the opportunity to hone in on those skills and I was very fortunate enough to meet a bunch of animators and go down that route. We’re talking old school animators from Fantasia. Early days, Snow White. It was nice to have that access and go down that way because it paved my path for the future, really. Even though it took a long time to get there, there was many different stops in between, but basically that’s where it started. And I lead that to me choosing the field of visual effects and working as a visual effects artist.
David Hirsch: Yeah. I remember that you had mentioned that you took a degree from the Gnomon School of Visual Effects in LA.
Gus Aguilera: Gnomon was one of those stops where it was a last minute thing where I basically just… I was tired of dealing with corporate America stuff and I did it because I had a responsibility, I had a family, I was a father, bills needed to be paid, the normal.
David Hirsch: That’s fabulous. I do [00:09:00] remember us talking about having experiences working at Microsoft as well as Amazon. Were those the two large businesses that you worked for?
Gus Aguilera: Yeah, I worked for both of them here when we got to Western Washington. Yeah, I bounced between those two major companies and doing IT and stuff like that.
David Hirsch: You and Bobbie Jo were high school sweethearts. You were married for 36 years before divorcing earlier this year, and you have primary custody of Gabe. So I’m wondering what insights can you share with our listeners about marriage and special needs?
Gus Aguilera: [laughing] Marriage, for those that are recently married or married or about to get married, it takes a lot of work, extreme work. Like you said, we were high school sweethearts, had been together since 1986 up until later this year. 36 years we shared. She’s been my one and only and we knew each other, we didn’t have to say a word and we knew what each other needed and wanted and and stuff like that. But again, marriage takes a lot of work and if you’re not willing to put that work in when things start to go a little south then decisions are made [00:10:00] and things happen. But… so stick with it, but really put forth the effort would be my advice to anybody listening today. Because it’s just… she’s my best friend, was and still is. We didn’t part on bad terms. We do have a 14-year old that we are raising together. She currently lives in a different state. But again, we made some decisions in our marriage and our life that kind of led us down this path. And there was a lot of damage created because of it. Again, that work wasn’t put into it when it should have been. And it was a little bit too late to fix what was done. We both admit it. We both have moved on. She’s in a current relationship and so am I. Again, we love each other and care for each other very much, but now we turn, close that one chapter in our life and opening up a new one with our new partners and we’ll see where it takes us.
David Hirsch: Thank you again for being so open and transparent. My heart reaches out to you. That’s a long time to be married and then chart a different path. And you sound like you’re in a better place today maybe than you were a year or more ago. And you just have to keep moving [00:11:00] forward, right, not to get stuck or go in reverse?
Gus Aguilera: Yeah, absolutely. Again, our differences and just everything that was going on was just starting to become too much. It was toxic. But with a lot of help and support from a men’s group that I found online and stuff like that, I was able to figure things out, work on myself, and know that there’s a life after marriage. It just came to terms that we couldn’t live under the same roof anymore because it just, it got to be too challenging.
David Hirsch: Yeah. Thanks again for sharing. So I’m thinking about special needs now and before becoming parents, did you or Bobbie Jo have any connections to the disability or special needs community?
Gus Aguilera: No, not at all. We knew nothing about it. And it was a little bit of a shock when we found out. It was brought to our attention by a geneticist. She was tested. We were under the impression it was an age thing. And then after getting a little educated, we found out it could happen to anybody at any age. It’s not just geared to older couples or whatever.
David Hirsch: So when you made reference to genetic testing, was that in vitro then? You found out before Gabe was born?
Gus Aguilera: Yes, we [00:12:00] found out before Gabe was born. So we knew he was going to be born with Downs. When we found out and got all that done, it was late in the stage because we were basically forced to make a decision on what it was we wanted to do moving forward. Clearly in days, if not a week to two before it was too late basically, which put a lot of pressure on us because we were nowhere near ready to have a child with a disability. How are we going to afford it? What are we going to do? And again you don’t know whether they’re going to be high functioning or low functioning and there was a lot of stress.
We weren’t given too many options to make a more accurate decision based on what was out there. We were basically pinned against the corner and just say, okay this is where it is, this is where it’s going. And you have a choice to make and being almost pushed to make a decision that we almost made. But after reevaluating and really thinking about it and basically asking ourselves with our other two, if something were to happen to them, if they were to become a paraplegic tomorrow, would we disregard them or [00:13:00] not, stop being their parents? And obviously the answer was no.
So that kind of solidified our decision. So we moved forward and basically got educated and that’s when we found the Down Syndrome Association of Orange County. And with their guidance and help and CHOC Hospital in Orange County, a new light was shined on us, basically showing us that, yes, people with disabilities, people with Down syndrome can very much have a very successful life and possibly live on their own, get married, and even have kids. Again that just put us at ease a little bit and knew that we made the right decision. And so we moved forward and not too long, Gabe showed up.
David Hirsch: Yeah thanks for sharing. It sounds like it was maybe a confusing period of time, right? When you get that information and you’re not prepared for it, you’re not familiar with it, there’s a steep learning curve, I think. That’s what would you say? And then you’ve got this very small window of time that you feel like, oh my gosh, I have to make a life or death decision. And maybe what I heard you saying was that you were reflecting on your values, the way you were raised, and you decided that, hey, [00:14:00] everybody’s different, right? Who are we to judge? And let’s make the most of the situation. I think, reference to some of the fears that you had. How are we going to do this? The extra costs involved, the uncertainty from a financial perspective. Were there any other fears? If you were to roll the clock back 14 years and think about the time Gabe was born, what was going through your mind?
Gus Aguilera: More or less just the challenges involved. Because again, without having such a… certainty of what to expect… Because again, when these kids are born, they can be born with zero complications. They can be born with a slew of complications. And we were very fortunate that Gabe only had three complications that were addressed almost immediately. And we’ve been very fortunate enough that ever since then he’s been fine. Outside of having Downs, and he’s a 14-year old non-verbal and still faces challenges with potty training and stuff like that. But outside of that, Gabe’s a typical child.
He’s a typical teenager right now. He’s rotten. [David laughing] He’s very independent. He [00:15:00] doesn’t like to be told what to do. Him and I have a love/hate relationship. It was more prominent when mom was around, but now that it’s just us, it’s not so much anymore. There’s still a little bit of a pull and tug, but he gets it.
And so yeah, we were very fortunate. And with the support of family and everything else with my family and even with her mom. She reconnected with her mom and was able to help a little bit there as well. But like I said, there was some disconnect there between Bobbie and her mom and she eventually left and there was a falling out up until the point that she passed away and they were able to reconcile before as one of her last words, basically, before she left this earth.
Let’s get educated. Let’s find out. Look into this. And that’s exactly what my mom did. My mom, she was a big advocate of that. She started reading the books and started finding out about it. And so with her kind of looking into that stuff that really seemed to help.
Unfortunately, we left California when Gabe was about five months old. She didn’t get to spend a whole lot of time with him, but she was there when he was little and she helped take care of him, change him and everything else. And because we lived in the same house with her because we were there. [00:16:00] I was taking care of my dad up until the point he passed. And my dad was fortunate enough to be able to hold him and be in his life for as short as it was, so he got that experience.
David Hirsch: Thanks for sharing. Thinking back now, was there any meaningful advice that you got from the medical community, from other parents, perhaps with a child with Down syndrome or otherwise?
Gus Aguilera: It wasn’t until we got into and got to know people at CHOC Hospital and within that network that we were getting positive advice, if anything. Because again, everything was so black and white with the medical community that all our information came from the Association, really. Books, resources, they had support groups, you name it. It was all available. And it was just a group that was there to support others at any stage of their journey with a child with a disability. But it was just to tell us, look, we’re not alone, and as we got further into it and more active, we found out there was more things online and stuff like that as well that Bobbie was part of that [00:17:00] community. If anything, we just found out that we weren’t alone and there’s people out there that could support us at different levels. So it was nice.
David Hirsch: Thanks for sharing. Not to focus on the negative, but what have been some of the bigger challenges that you’ve encountered related to Gabe’s situation. You mentioned he’s non-verbal, he’s not potty trained. What seem to be the obstacles, other obstacles?
Gus Aguilera: Just trying to figure out what he needs and wants has been the biggest obstacle, I think, because all I would like to do is just talk to my son, ask him what’s wrong, and then have him tell me in the best way that he can so I could try to support him a little bit better. I feel that I’m not able to, and it’s a guessing game all the time. And that hurts as a parent. Just because when your child’s hurting… Here I have a 14 year old who’s going through hormones and occasionally has an outburst because he’s all over the map and doesn’t know how to handle it. I can’t explain to him. I can’t tell ’em anything. So that’s hard. That’s hard from my perspective.
And also just being out in public and doing things. He has a lot of sensory [00:18:00] issues, loud noises affect him sometimes, and sometimes you don’t even know what sets him off. There’s times where he’s fine one minute, and then you can give him a direction to do something else, and if he just doesn’t like it, then it can lead into something explosive and that’s hard, I think. That’s hard to deal with physically and emotionally because it’s like you’re always walking on eggshells. And I found myself to be – we both did – we found to be almost prisoners of our own home in a sense, because it was really hard to do anything as a family. Because one, you never knew when Gabe was going to have an episode, and we would have to deal with it. We had to deal with it a few times out in public.
And also just the public themselves, people that are non-educated or a little ignorant. Those challenges and the looks that he gets and the comments that are made, those are hard to deal with as well. And I don’t know if I’ll ever be able to get used to that. Even now. Still happens on occasion. For the most part, people can see, evaluate the situation, they nod, they smile, and they will offer at times [00:19:00] to help if they can, if they see there’s a struggle or something going on, especially now since it’s just him and I. And when we do go out, I’ve had people come up to me and ask me if I needed assistance or whatever.
I think those are some of the major challenges. It’s just getting used to not knowing, it’s always like going to Vegas and rolling the dice; you don’t know what’s going to happen.
David Hirsch: [laughing] Okay, thanks for sharing. So you mentioned he’s non-verbal. Does he use a tablet to communicate, or how does he communicate?
Gus Aguilera: He does. He uses a tablet. He has a tablet that’s an ACC device. He has some software on there, and he is very intelligent. He may not be able to speak and may not be able to go potty in the toilet, but let me tell you, he is a whiz with a tablet. I’m an IT guy as well, and he surprises me sometimes. He’s very intuitive of what’s going on, what he can do. It’s amazing to watch him sometimes. It’s just the way he thinks and does things. And he doesn’t forget. He’s very, like I said, he’s very intelligent. He just likes to play people. He likes to feel the atmosphere. He likes to feel the people out and see what he can get [00:20:00] away with for how long and see how many buttons he can push. Typical child. So that’s where the typical child or teenager comes in.
Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now, back to the conversation.
David Hirsch: And I think one of the things you mentioned in a prior conversation, too, is just where you’re at, Whidbey Island, which is a nice sort of not remote, but you’re not certainly close to Seattle or downtown where there’s a lot of resources. I’m wondering, is that also one of the obstacles as well? One of the [00:21:00] challenges?
Gus Aguilera: It has been. Yeah, it has been. Really, prior to the pandemic, there were things that were a little bit more readily available. Still limited because of the distance because I’m so far north. I’m basically about 45 minutes away from the Canadian border. So there were some things available, but post-pandemic, everybody’s gotten out of the trade. It’s virtually impossible to get anything. Childcare has been one of those things where I have had struggles with for the longest time. I’ve been on a childcare provider search for the last two and a half years, and it wasn’t up until literally two to three weeks ago that I finally found one. And my search finally ended and she starts Monday.
So it’s great because now a whole new world opens up because I haven’t been able to work. I’ve had to quit 9-to-5 jobs several times. I tried working from home. There were customer service type jobs. I had to be on the phone. I had to take care of …text customers, whatever my role was at the time. And it worked while he was in school, but when he got home, then [00:22:00] if he needed attention, he needed to be changed, or if he was having a meltdown, I would have to get up and deal with it.
Like most situations, I was applauded for what I was doing as a father, but reality was they hired me to do a job and I wasn’t able to do it. I was given an ultimatum of either rectifying the problem or quitting. I’m not going to choose a job over my son. I could always get another job somewhere.
So those have been challenges as well. Just trying to keep working and working consistently. And also with that being said, my work working for Hollywood has also been very limited as well, because I’m no longer able to travel. I’m not able to go to work at the studios. We have to sign NDAs and sign our lives away for the projects we work on. Again, during the pandemic, it was a little bit easier to work from home because things needed to get done. But now that things are back to semi-normal, you have to be there. You have to be where the projects are at. Things have changed quite a bit. And because of my situation, I’m not able to travel. And projects aren’t usually a week long or a couple of days long. They could be months long, a year long. [00:23:00] Also the consistency is very difficult. It makes it tough.
David Hirsch: It does sound like it would be very challenging. And the other question that comes to mind, when you have a child with different healthcare needs, is the medical insurance that goes along with being employed. Has that been a challenge or have you got a solution for that as well?
Gus Aguilera: Several years ago, again prior to the pandemic, actually things were a lot different. They were easier. There were still challenges involved, but they were easier because when I had to go back to corporate America and I started working for Microsoft, I had some real good insurance with some real good coverage, and basically anything that my son needed was covered. No questions asked. Anything that my wife needed was covered. No questions asked. But several years later, pandemic happened and everything else. I went back to work specifically, again, for insurance coverage to get better coverage than what we had through state insurance. And there was all sorts of challenges there because things had changed. And I almost had identical insurance that I had when I worked at Microsoft working for Amazon. But they [00:24:00] refused to cover anything. So it was interesting to see how that happened just because, we’re talking two major companies, major insurance companies, really good coverage. But it was just because of the way that we are in this world today and the way it was 10 years ago is completely different. So there’s been extreme challenges. And actually, I was actually getting better coverage, having state insurance sometimes. There’s some challenges there, but they were at least covering things. He was getting stuff and therapies and stuff. But those things, when you’re having to go down that realm there’s a lot of limitations and challenges as well, because if you need special therapists or you need special say like ABA services, stuff like that, which was a challenge I had for the longest time and still do, you have to go on waitlists that are two, three, four years long, and sometimes they never get to you. Or if they do, you’ve forgotten about it, your phone number’s changed, whatever the situation is. It’s very heartbreaking to have to go through.
And also, it revolves around a label. And my son has Down syndrome. He was tested for [00:25:00] autism. But because my son was so engaged at the time of the testing, they deemed him not on the spectrum. But every therapist, every doctor, everybody that deals with him one-on-one and deals with him all the time says he’s on the spectrum.
So those have been challenges as well, because again, everything has to have a label. And if you don’t have a label, then your services stop at a certain point. And that’s what happened with us because he had only Down syndrome. We basically exhausted all the resources he could have as a Down syndrome child. But if I would have gotten the autistic diagnosis for him, a whole new world would have opened up for him and more services and more things available for him.
So that’s very frustrating for us as parents because if you have a child with a disability and they need help, they should be able to get it and you shouldn’t have to fight tooth and nail to try to get that and justify why he or she needs it.
David Hirsch: Yeah thank you for being so open. Is there a chance that he could get retested as it relates to the autism diagnosis or not?
Gus Aguilera: [00:26:00] Yeah, I’m actually going back and reevaluating that, trying to find somebody to do the exam again that insurance will cover because, again, you have challenges there when you are part of a state insurance program where you have to go to certain individuals to have it covered. But I’m looking at it now and I’m trying to get him reevaluated. We’ll see. That’s my new journey. I tabled it a long time ago because I just got frustrated.
David Hirsch: Yeah. It’s a marathon, it’s an endurance contest, right? It’s not a sprint and sometimes you just need to take a break, right? That’s what I heard you saying. And recharge your battery and maybe look at it a little bit differently or come at it from a different approach. And hopefully you’ll lean in, right? You need to be an outspoken advocate for yourself and your children. And and I’m hoping that you’ll have a higher degree of success the next time around.
Gus Aguilera: Thank you. I hope so. Yeah.
David Hirsch: I’m thinking about impact [00:27:00] and I’m wondering what impact Gabe’s situation has had on his siblings, his older siblings.
Gus Aguilera: Unfortunately his sister hasn’t been around in his life a whole lot just because she lives in Northern California. We’re up here. Even when we lived down in California, we were separated by distance a little bit. But ever since we’ve been up here, she’s been up here to visit once. And she understands the challenges because she’s also going to school to be a paraeducator because of her brother, but she does understand it. His older brother lives with us. Again, it’s myself and my boys, and they have a great connection, even though there is a huge age gap. His brother is very protective over him. He doesn’t let anybody watch him or handle him unless he feels safe. Typical brother rivalry here and there. He gets on his nerves, but it’s fun to see them interact. Gabe’s a… even though he’s 14 and he’s a ” teenager,” there’s still a very innocent part of him that still comes out, that childlike that still comes out. So he still carries around his Paw Patrol puppy and likes [00:28:00] to hang out with his brother and his dad on occasion. Not often, but he does, so it’s nice. But yeah, he has a real strong connection with his older siblings and they would immediately step in if something were to happen to myself or my now ex-wife, that they needed to be able to raise their brother or handle certain situations. So it’s nice to see.
David Hirsch: I’m glad to hear that. And there is a big age difference, right? 13 years between him and Jordan and then the better part of 20 years between him and Cassie. So I’m thinking about organizations, supporting organizations. You made reference to one: the Orange County Down Syndrome Association when you were in California. Are there any other organizations that have played an influential role, either on Gabe’s behalf or for your family overall?
Gus Aguilera: Yeah for me specifically the Father’s Network here in Washington State. When we first came here, I tapped into them and tried to get resources from them and just to get better educated and develop a network of support and help.
Also the Seattle Children’s Hospital Network [00:29:00] and that inner network there has been very instrumental and helpful with the things that we’ve needed for Gabe. I don’t take Gabe anywhere but Seattle Children’s just because they know how to handle challenging kids like Gabe as well. Because he’s been poked and prodded ever since he came out of the womb. And he’s developed a fear of people in scrubs. And because he’s non-verbal and I can’t talk to him and explain to him what’s going on, that’s also challenging and it hurts because I gotta see my son suffer and go through these things that I can’t just say it’s okay, you’re going to be fine. Because he just doesn’t get it.
But yeah, so between those two organizations and just some of the teachers that he’s had in his life since we’ve been here on the island and here in Washington have been a great help and have really curbed Gabe to be a better little human being and really deal with him and really understood him because he doesn’t click with everybody. So it’s taken some special people for him to click. And the people he has clicked with have made a big difference in his life. Yeah, kudos to them because they’ve made our life a little easier.
David Hirsch: You talk a little bit [00:30:00] about education and I’m wondering is he in a mainstream program or in a special ed program?
Gus Aguilera: So he’s in a special ed program. He just started high school. He’s a freshman. It’s still hard to believe that I’m saying that, but he’s a freshman this year. So yeah, he’s in high school. He’s getting the high school environment. So he just started on Tuesday. There’s been a couple challenges there. Again with new environment, new teachers, new everything. He’s pushing to see what he can get away with. He’s had that teacher in the past before during summer school and stuff. So she knows Gabe. She knew him at a different time when he was having some more challenges. She hasn’t really dealt with him since he’s been a little bit more mellow because he is. He does take medication to help him curb some of those problems or not really problems, but just the outbursts that he has on occasion. So that helped. He’s an eloper. He likes to run. He likes to try to escape. Unless he has somebody sitting right next to him, holding him down to the chair or duct taping him to it, then he’s off and running and he’s waving goodbye to everybody.
David Hirsch: So I’m wondering about advice now, and I’m wondering [00:31:00] if there’s any advice that you can suggest for parents, maybe parents raising a child with special needs, not necessarily Down syndrome.
Gus Aguilera: Have a lot of patience. Every one of our special children are very different and they’re very independent. Get educated, talk to as many people as you can, join networks, read books, do what you can because the information is out there and unless you look for it, it’s not going to be offered to you just independently. And every situation’s different. Every person is different. Do your research, get on Google, programs like this that you can tap into and try to get advice.
But yeah, just try to get educated and try to find that support because you will need it at some point. It’s not an easy journey. It started off, I wouldn’t say easy for us, but it started off less challenging. And it’s become challenging as he’s gotten older. But because of the support and groups and organizations and just the things that are out there, we’ve been able to make modifications and be able to [00:32:00] deal with the challenges ahead of us.
There’s not one solution for one thing. You can’t apply the same concepts you apply with your other children to your special needs children because it just doesn’t work. You have to adapt to them and what works for them. Because it’s going to make your life a lot easier and it’s going to make their life a lot more enjoyable.
Those are the biggest things I’ve learned along the way and I’m still learning. Every day is a learning curve. Like I said, you never stop learning. They teach you something every single day. it’s fun. It’s fun to grow and to grow together. Very frustrating at times but fun nonetheless.
David Hirsch: Yeah. Thanks for sharing. So why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Gus Aguilera: I just figured I’ve had a lot of challenges along the way. And when we started this challenge or this journey, we didn’t have anybody. It was hard at times. But I figured, I’ve got 14 years of experience and there’s been different levels of challenges. And if I can help somebody else, even just a little bit along the way, I’d be more than willing to help any way I [00:33:00] can because like I said, every one of these kids are different and they’re special and you have to approach them all very differently. You can’t just pull out an instruction sheet and follow the same thing for all of them because they’re all individual people. Just like with my son, they say Downs kids are very lovable and like hugs and all this and that. My son, he’s the complete opposite. He’s a very independent person and he likes his attention, but he likes to be left alone as well. Yeah we’ve encountered a lot of different things along the way and we’ve had some help which has helped us and if I can turn around and do the same thing for somebody else who is either about to start their journey or already is on their journey and maybe just needs a different perspective of things, yeah, that was my main reason for wanting to do this.
David Hirsch: Yeah thanks for sharing. We’re thrilled to have you involved. And it’s not lost on me that you’re 14 years in, Gabe is 14 years old, and it’s great that you’re making yourself available perhaps to mentor a younger dad. But there’s going to be a huge opportunity for you to connect with some of the more seasoned [00:34:00] dads in the network who are 5 or 10 or more years ahead of you, right? There’s a lot to be learned. And you’re of the right mindset, which is I’m not going to try to figure this out on my own, right? I want to be part of a group of people that understand and accept so this isn’t such a challenging journey, right? It can be very challenging if you want to make it challenging.
Gus Aguilera: Absolutely.
David Hirsch: But it makes it a little bit easier if you’re going through this with others that have been there and done that. So if somebody wants to learn more about your work or to contact you, what’s the best way to do that?
Gus Aguilera: Really email would probably be the simplest and easiest way to do it because of my schedule and the multiple things that I have got juggling and and going on. Feel free to reach out via email to make the initial contact. We can go back and forth and then we can always connect via phone or, with technology, we could do a Zoom call or whatever. Yeah, but I think email would be the simplest to get going in the very start.
David Hirsch: Okay, we’ll be sure to include that in the show notes, so it’ll make it as easy as possible for somebody to reach out [00:35:00] to you. Gus, thank you for your time and many insights. As a reminder, Gus is just one of the dads who’s part of the Special Fathers 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 21stCenturyDads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Gus, thanks again.
Gus Aguilera: My pleasure. Thanks for having me.
Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching [00:36:00] process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.
Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at [00:37:00] HorizonTherapeutics.com.