190 – Shandra Cubin Co-Founder of Special Hearts, A Dating App For Parents Of Kids With Special Needs & Who Has A Son Hyperlexia

Transcript:

Tom Couch: 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.

Shandra Cubin: Don’t ever give up. Always advocate for your child. Always stay positive. Even in the darkest days when things are the toughest, believe that things will turn out the way that they’re supposed to, and believe that you’re going to make it through this storm.

Tom Couch: That’s our guest this week, Shandra Cubin, the co-founder of Special Hearts, a dating app for parents of kids with special needs. Shandra also has two children, one of whom, Koen, has been diagnosed with Seizure Disorder and Hyperlexia. We’ll hear Shandra’s story and more on this Special Fathers Network Dad to Dad Podcast. Say hello to host 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’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.

Tom Couch: And now let’s listen in to this conversation between Shondra Cubin and David Hirsch.

David Hirsch: I am thrilled to be talking today with Shandra Cubin of San Diego, California, a mother of two young children, a wife, and co-founder of Special Hearts, a dating app for single parents raising children with special needs.

Shandra, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Shandra Cubin: Thank you, David, for having me.

David Hirsch: You and your husband Rich are the proud parents of two children, Cecilia, four, and Koen, six, who was diagnosed with Seizure Disorder as well as Hyperlexia. Let’s start with some background. Where did you grow up? Tell me something about your family.

Shandra Cubin: I grew up in San Diego, California, born and raised, and I grew up in a law enforcement family, which I think is unique. My parents were both in law enforcement. My stepdad went on to become Chief of Police here in San Diego. My mom was a deputy sheriff. My stepbrother was Las Vegas Metro PD.

So I came from this huge law enforcement and lawyer family. I ended up getting into figure skating, which was definitely different, and took that all the way for 21 years. I skated competitively at an elite level, and retired out when I was in my late twenties, and that’s kind of my interesting story.

David Hirsch: Well, that is very interesting. There are a lot of people that are playing by the rules, if you will. If both your parents, your stepdad and your mom were law, in law enforcement, and your stepbrother, and I don’t want to say it sounds like a no fun family, but no doubt there were some rules to be followed, and you learned from the very beginning a little bit more about what’s right and what’s wrong.

Shandra Cubin: Absolutely. I think I was on home school and home study because of my figure skating from a young age, and so I’m thankful now. I don’t think I was that excited when I was younger, but I’m thankful, looking back in retrospect, I lived a very insulated childhood.

But I think it was a good thing, because I learned discipline, I learned respect. I learned to respect others. I learned to respect laws. And I think that ultimately it really shaped who I am today. And I’m thankful that my parents were on the stricter side, but I got to see things from a different point of view, being a child with both parents in law enforcement, and I think it was a good thing.

David Hirsch: That’s great. So you mentioned that your stepdad was your primary father figure when you were growing up, and I’m sort of wondering, how would you characterize your relationship with him?

Shandra Cubin: He was fantastic. He was a hundred percent my father, and I never looked at him as a stepfather. He was just fantastic, and I was Daddy’s little girl. He’s an amazing man, and I learned a lot from him. And a lot of my foundation was based on his teachings and what he was able to provide for me.

David Hirsch: That’s fabulous. So in addition to the discipline and respect that you talked about, is there any lesson learned or thing that you’ve incorporated in your own parenting that came from your father?

Shandra Cubin: Just to be patient. He was always very patient with me. He was always very level-headed. He was always the person that I could go to that I knew wouldn’t overreact. And so I would like to be more like him actually. And it takes work to be that calm collected parent, but he was always that person for me.

He was always the person to right wrongs and walk me through things in a calm fashion, and I wish I could be more like him. But that’s definitely what he gave to me growing up.

David Hirsch: That’s fabulous. So I’m wondering if either of your grandfathers played an influential role in your life, starting on your dad’s side and then your mom’s side.

Shandra Cubin:  On my biological father’s side, I would have to say no. On my mother’s side, my grandfather, whom I love dearly, is a fantastic man. He was in the Marine Corps, very proud of his service to the US, and he went on to become an engineer, worked in aerospace technology.

Just a brilliant man, and I love him to death. He’s still with us. Just a fantastic person, fiery, fun, a comedian. And I could always depend on him for love and support no matter what.

David Hirsch: Well, that’s fabulous. Not everybody gets to know their grandparents.

Shandra Cubin: Absolutely. Absolutely. And he’s still going strong today, doing his thing. Age doesn’t slow him down.

David Hirsch: That’s fabulous. So from what I remember you saying, you were homeschooled as a young person. I recall you went to the University of Arizona, you took a degree in literature, and when your education ended, I think you had mentioned you’d spent 20-something years skating. I don’t know too many people that have pursued a skating career. How did that start, and where did that take you?

Shandra Cubin: So I began when I was young, and I had the goal of making it to the Olympic Games. That did not happen. However, I certainly had a substantial amount of success in my skating career. It was a difficult transition when I left, because my identity was rooted in my figure skating. Everyone knew me as the figure skater. That was who I was.

So despite the discipline that it taught me and the good times I had, it was a very difficult transition leaving the world of competitive sports to form a new identity, especially in my mid to late twenties when most people have a career, they’re finished with school and they’re starting families and getting married.

I felt like I was starting all over again, as if I had just graduated from high school. So I was already done with one career at that point, and it was a big life change for me to leave that world.

David Hirsch: So where did your career take you?

Shandra Cubin: As I mentioned, I wanted to go to law school, so I finished my degree. I thought, you know, I’ve done so much with regard to pleasing everybody else with figure skating my entire life. And now I feel like I am just going through the motions, trying to please my family by going into law. I don’t know if I should do that. So I changed up everything and decided that I’m gonna do some stuff for myself from here on out.

David Hirsch: And where did that take you from a career standpoint?

Shandra Cubin: From a career standpoint, I wasn’t sure what I was going to do with that degree. I kind of threw around wanting to go into the field of psychology. I thought, “Well I’ll get my master’s and my doctorate in psychology, and I’ll go into that field because I would love to work with athletes.”

I suffered a lot of I would say mental health issues that I think a lot of athletes deal with, when you’re in those high pressure situations competing and needing to win and be perfect. And so I thought, “Okay, I’m gonna give back to athletes. That’s gonna be my contribution to figure skating, just athletes in general.”

And I thought that that would really be fulfilling. And it was then, along with my mentor, that we decided, “Hey, it would be a great idea to put an ice rink, an outdoor holiday ice rink, in San Diego at the world famous Delmar Fairgrounds and at the racetrack.

So I sent an email to a rink building company that I knew worked with the NHL. They were the best in the biz. And I met with my future husband in Santa Monica, and after I met Rich in the meeting, pretty much all of those plans changed.

David Hirsch: So did the ice rink ever get built?

Shandra Cubin: You know, as a matter of fact, the ice rink did get built. It was actually built when Rich and I were married, and it turned out to be an amazing project, something we were both very, very proud of.

But that initial meeting in Santa Monica, California, led to Rich and I starting to talk as friends for a while. And then I went to Michigan to work on the Winter Classic, because he was doing a rink at Comerica Park, and also working on the Winter Classic when it was back there.

And from there on out, it’s kind of history. We started dating, and I decided that I really wanted to be a mom. And again, like I said, all of those plans that I had set in stone definitely changed overnight.

David Hirsch: So let’s switch gears and talk about special needs. And I’m sort of curious to know, before Koen’s diagnosis, did you or Rich have any exposure to the special needs community?

Shandra Cubin: I had a moderate exposure through my grandmother, who was a school teacher who worked in special needs for 25 years. She was just such an angel on earth and loved her kids so much. I didn’t understand the compassion that she had for these children until we had Koen.

But that would be the only experience I really had, just listening to her stories, seeing the compassion, seeing the love that she had for her children in the classroom. And again, like I said, she was just such a special woman, and she was so patient, and her heart was just so full of understanding and empathy for these children. But again, I just didn’t understand the depth of her love until I had Koen.

David Hirsch: So what are Koen’s diagnoses, and what’s the backstory?

Shandra Cubin: He actually has Seizure Disorder, which is something I’ve been told now at this point is likely has a genetic component to it, because I probably suffered from it as a child as well, yet undiagnosed. So he deals with that, which is pretty under control at this point. He’s also has Hyperlexia 3. There are different levels to that, and that would be Hyperlexia with some traits of autism, but something that he will likely grow out of, so to speak, with the proper therapies and interventions.

It’s very interesting, because all of his deficiencies are slowly but surely starting to kind of rectify themselves. I see it every day, that he’s slowly but surely improving, and things that used to be challenging are no longer challenging at this point. I think it’s somewhat of a unique diagnosis that I hope this podcast brings a little bit of attention to.

But it’s definitely been a challenge. It’s been a challenge, and it’s been difficult. And one of the things as a mother that’s hard for me is he is well aware of his challenges and deficiencies, and that to me is very hurtful. Because he understands that, hey, listen, things are tough for me sometimes. And that is hard, you know, as a mother to sit back and watch, because of course I want to step in and save him and make everything easy for him, and want him to just have a normal life with no issues whatsoever.

But that’s not the life that we lead right now. But hopefully in the future, that’s something that he’ll be able to have.

David Hirsch: So my understanding of Hyperlexia is it’s when a child starts reading early, like surprisingly beyond their expected ability, and often is accompanied by sort of an obsessiveness with letters and numbers. Is that what we’re talking about?

Shandra Cubin: Yes, absolutely. He started reading and writing when he just turned three. We spent a lot of time with him, but it seemed remarkable, especially after we had our daughter. Because she’s actually a very intelligent little girl, but she wasn’t hitting the same milestones, if you will, that Koen was when he was two and three years old.

And so he would go in the bathtub—and we had him in speech therapy at that point—he would go in the bathtub and he would write his ABCs in paint or he would write words or his name or numbers. And it was just so odd to see this three year old little boy writing and reading.

He taught himself how to read, which is remarkable. He used phonics. I helped him a little bit, but he was just able to pick up a book and read it. And I’ve had so many people and doctors alike go, “It’s just unbelievable to watch this small child read a book.” And so when we had him in speech therapy, they definitely understood that there were issues.

They didn’t give a formal diagnosis at that point. They did assess him, and they thought, okay, this is kind of an interesting child. He’s not hitting all the markers for autism, but he definitely has his challenges. And then you kind of put this Hyperlexia on top of all of this, and it’s very unique. He’s just such a special boy. But you know, like I said, to see a little three year old reading and writing is something special, certainly.

David Hirsch: Well, thanks for sharing. And from what I remember, there’s also a diagnosis of DCD, Developmental Coordination Disorder. I’m wondering how that came about, and what were some of the fears or concerns that you had as a parent with this Hyperlexia diagnosis?

Shandra Cubin: Well, some of my fear is that it will be very difficult for him to overcome some of his challenges. Certainly, I think any parent that’s dealing with a special needs child has those fears, no matter how small or big. And another fear that I have is him not being accepted by his peers. You know, childhood is difficult enough when everything is seemingly perfect, and then you throw a disability into the mix and kids are cruel.

And luckily we haven’t experienced anything like that thus far. But that’s something that I worry about, and I worry about it affecting him as well. Maybe if he doesn’t experience it firsthand from kids in the community, he’s very difficult and hard on himself.  He’s told me before that he feels broken, that he’s broken. Which is heartbreaking.

And it’s something that I’m not sure he’s ever heard. He certainly hasn’t heard it from us. But as a parent listening to your son cry and say that he’s broken, he’s broken, is tragic. It’s gut wrenching. And so these are some of the things that I worry about, that his challenges will be difficult to overcome. And then he will be so hard on himself that he will experience depression or other issues that go along with that.

David Hirsch: Well, thanks for your transparency. I’m sort of wondering if there’s any meaningful advice you’ve received, either from a therapist, somebody in the medical community, or beyond.

Shandra Cubin: I guess the best advice that I’ve received—and thankfully we’ve been able to work with some excellent people—would be that early intervention is key, and just the support that, “Hey, listen, things are going to be okay.”

We’re always around to figure out what he needs and what’s best for him, and just keep the faith and believe that he is going to overcome his challenges. And stay steadfast in your pursuit to make sure that he leads an independent life and that he’s healthy and happy.

There are always resources out there for you, and there are always people out there in groups that can support and help and guide you through some of the challenges that you’ll face moving on.

David Hirsch: Excellent. Thank you for sharing. I’m sort of curious to know what, if any, impact Koen’s situation has had on his younger sister, Cecilia, or on your marriage, or the rest of your family, or your extended family, for that matter.

Shandra Cubin: It’s been a very humbling experience. Certainly it changed the trajectory of my life completely, as well as my husband Rich’s. We really kind of suspended our business operations to make sure that Koen is taken care of. It’s been completely life altering. It’s been tough. It’s wearing on you at times, and it’s hard to stay positive.

It’s been a huge burden on our relationship. I won’t lie. It’s been challenging. It’s been challenging to try and keep a marriage together in addition to making sure that Koen is taken care of. And there are times that I feel guilty, like I’m not there for my daughter as much as I am for my son, and she’s only four years old. But she is such a special little girl, and she’s so patient with him and just so loving and compassionate.

She loved him from inside the womb. She would pretty much only respond to him touching my belly and talking to her. They’ve just had this amazing relationship since before she was even born. And I would definitely say he is just the love of her life right now. And thank goodness she’s just such a good little girl and patient little girl.

But I do feel a certain amount of guilt because Koen does need extra assistance, and I feel like I’m not always there for her. You know, I try to split my time equally, but it’s a challenge. But as of right now, thankfully I have my mom to help us on a daily basis, and she’s sacrificed pretty much everything at this point to make sure that Koen gets through what he’s going through.

She’s with Cecilia every day, and so to have that extra set of hands has made a world of difference. So I don’t think that Cecilia is suffering in any way, shape or form. Maybe I feel the mom guilt at times.

But other than that, it’s been a real challenge. Like I said, it’s been a very humbling experience. It changes your outlook on life. It changes your outlook on humanity. I look at people in an entirely different way now. I have a lot more compassion, I have more empathy, I have more patience, and that’s just not for my son. That’s for everyone in general.

David Hirsch: Yeah. Well, thank you for sharing. Thank God for grandmothers, Cecilia’s grandmother, your mom, and your own grandmother. Looking back now, you could put in perspective the empathy and compassion she had for her students over her long career as a special education teacher.

I’m sort of curious to know, beyond the speech therapist that you made reference to, if there are any individuals, or organizations for that matter, that have been instrumental in assisting with Koen’s situation?

Shandra Cubin: I’ll be honest, because it’s kind of a unique diagnosis, I would say no. There is a small group of moms here or there in San Diego that I could connect with at some point. But other than that, I would say we’re kind of on our own. I’m blessed that he had an amazing speech therapist that was just so patient and loving with him.

He’s no longer working with her, because she moved back to Greece. But I credit her for really getting him to start speaking and opening up. But there are not a lot of groups that are geared towards what Koen’s dealing with.

David Hirsch: Okay. Well it sounds like the journey could be a little bit lonely then, if you don’t have others that you can sort of share your own experiences with and maybe reflect on their experiences. And in a perfect world, you would be able to find other parents that have a similar diagnosis, but they were like three to five years ahead of you, right? So you could sort of peek around the corner or see down the road, so you knew what to anticipate and maybe gain some insights or confidence that things can or will get better.

So let’s talk about your experience with Special Hearts, this organization that you and Rich have connected. How did the idea come about? And what is your vision for the Special Hearts dating app?

Shandra Cubin: So the idea came about when Koen and I were outside gardening one day. All of a sudden, like a little whisper from heaven, maybe from my grandmother, it popped in my mind. I thought, wow, if I had to be back in the dating scene, it would be very difficult for me. And gosh, how hard must it be for single parents of special needs children that are navigating that dating scene, trying to find somebody special while caring for their special needs child.

And so I thought, wouldn’t it be a fantastic idea if we created something like match.com or Tinder that would just be geared towards parents or caregivers or grandparents or whomever that have special needs children or deal with special needs children to a certain degree. And I thought, you know, this might be a really unique site that we could build.

David Hirsch: So when did you start it, and where is it now?

Shandra Cubin: So we started it a few years ago. I presented it to Rich, and he thought that it was a great idea. But being a successful businessman, of course, despite me being his wife, he wanted a business proposal. He asked if I had done any market research. He wanted to know if there was anything similar, and what the statistics were, and what the divorce rates were, and statistics of special needs children and so forth, in the US and globally.

So I got some of that information together, and I presented it to him. I said, “I think we have a real shot at creating something very special, as there is nothing else out there like it.” And we went from there.

We started working with an app developer, and that took a little bit of time to make sure that everything was running smoothly and it was the way that we wanted it to be. We wanted to make sure that it was very user friendly and something that would be very easy to download and just kind of figure out on your own. We really focused on simplicity.

And we’re doing well now. We have almost a thousand members, and we are continuing to grow organically. We do the best that we can with advertising, which is very strict on social media when it comes to dating platforms, but we’re definitely doing everything that we can to get the word out.

David Hirsch: That’s fabulous. So I remember visiting the website, which is special-hearts.com, that the mantra is “Meet, date, and relate.” I’m wondering if there’s an anecdotal story or two that you might be able to share from one of the early users, one of these 1,000 members, that might emphasize the program you have.

Shandra Cubin: Yeah. Well, Rich of course came up with “Meet, date, relate,” which I thought was just brilliant, because that’s what we wanted. We wanted to be able to connect people that can relate to their situations. And we have had some success. We’ve actually had some users that have reached out and asked to have their profiles deleted because they did find somebody special, and they did want to jump in and start a relationship with that person they’ve met.

And so it’s just so heartwarming to see those emails come across and, you know, the more, the merrier. We hope that happens for everybody. And at a minimum, hopefully they can make some good connections and some friendships perhaps, and some love connections certainly. So we have had a little bit of success connecting people, and hopefully those relationships stick.

David Hirsch: Yeah. Well. from  your lips to God’s ears, which is what my grandmother used to say. I’m hoping that there’ll be a similar experience for a good number of your users, which is they made use of the app, and they were able to identify a person or some people that they were able to develop a meaningful relationship with as a result of the effort that you put out.

So if somebody was curious to know about the Special Hearts app, where would they find that? Or how does it work? You know, if somebody said, “Oh, I’m interested. Is it free? Is there a cost? How does it work?”

Shandra Cubin: So you can visit the website, which is special-hearts.com, and it’s very easy to download the app. We also have the app on Google Play Store. So you can either download from the website or you can go on Google Play and download from there. It’s free to download, and it’s free to browse through the users.

We do charge a $10 fee for 90 days. We wanted to keep it modest while we’re getting off the ground, and we know that parents of special needs children often face a lot of financial hardships, making sure that their children are taken care of. So that’s why the modest price point for right now

Like I said, we’ve tried to make it as user friendly as possible, so it’s a pretty easy download. And on the website it gives our mission statement and what we’re about. In addition to that, we give back to charities. And we would certainly like to give back a lot more. That’s why we want to grow this on a global scale.

But one of the biggest things that meant the most to us, because we understand the financial strains that come along with dealing with a special needs child, we wanted to be able to give back to some of these organizations that support these parents and do our part. So not only do we want to connect single parents, but we also want to enrich the community and give back as much as possible.

David Hirsch: That’s fabulous. Well, thank you for sharing. And I’m thinking about advice now. I’m wondering if there’s any advice that you would give a mom, or a dad for that matter, who’s raising young children with special needs.

Shandra Cubin: I think the advice that I would give is don’t ever give up. Always advocate for your child. Always stay positive. Even in the darkest days when things are the toughest, believe that things will turn out the way that they’re supposed to, and believe that you’re going to make it through this storm.

It can be tough at times. It really can, and it’s difficult to stay positive and optimistic, but my advice would be that things tend to get better, so just keep that positive mindset, believe in your child, and don’t ever give up.

David Hirsch: Yeah. Well, pearls of wisdom. Thank you for sharing. And I’m wondering what if any role spirituality has played in your lives?

Shandra Cubin: For myself, I am very spiritual. I would like to believe that there are lessons to be learned from all of this, and I try to find those lessons and make the best of  them every day. Like I said, it’s difficult at times, but I would like to believe when I do meet whomever is on the other side, that I can tell that person or entity that I did the very best that I could.

And so I try to find the lessons that I feel I’m being taught, with everything that Koen is going through. And I think that would be patience and sympathy and empathy and understanding, and compassion most of all. And so I thought, okay, well maybe I needed to learn those lessons in life, compassion and empathy, not just for my son, but for humanity as a whole. And so I think that that would be my spiritual viewpoint at the moment.

David Hirsch: That’s fabulous. So I’m wondering if there’s anything else you’d like to say before we wrap up.

Shandra Cubin: I would just like to add that if you’re in a situation similar to ours with a special needs child, again, just always advocate for your child. Always believe that things are going to turn out the best way that they can, and be there and be patient and love that child for the unique person that they are, despite their challenges. And give it everything you’ve got in terms of making sure that they’re taken care of and their needs are met, which can be very trying at times, but that’s where I’m at right now.

David Hirsch: I think that’s fabulous. So if somebody wants to learn more about Special Hearts or contact you, how would they go about doing?

Shandra Cubin: So you can visit the website, special-hearts.com. You can email us. There’s a link at the bottom, and that will be either sent to myself or Rich, and we’ll be there to answer any questions.

We’re also in the process of creating an entirely separate website, which will be specialhearts.com, no hyphen, which will again go over our mission statement and our goals and where we’re at in terms of connecting people, and where we’re at with our charity work and so forth. So that’s in the works, and that’ll be something nice to just kind of review where we stand.

And then Special-Hearts is for the download to download the app, and any questions can be sent to Rich or myself.  

David Hirsch: Excellent. We’ll be sure to include that in the show notes so it’s as easy as possible for people to follow up. Shandra, thank you for taking the time and many insights. As a reminder, Shandra is just one of the parents who’s part of the Special Fathers Network, a mentoring program for fathers raising children 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.com. 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 501(c)3 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.

Shandra, thanks again.

Shandra Cubin: Thank you.

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 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 disease. Discover more about Horizon Therapeutics at horizontherapeutics.com.