060 – Martin Cuevas: One of his 4 year old twin daughters has the rare Pitt Hopkins Syndrome

Dad to Dad 60 – Martin Cuevas: One of his 4 year old twin daughters has the rare Pitt Hopkins Syndrome

Martin Cuevas: And that’s when life changes again. Cause I remember that I believe it was January 24th. We got the phone call from our neurologist. She hadn’t heard of it. She didn’t know what it was. Nobody did. She was like, you guys have Pitt Hopkins syndrome and she led us to the foundation and you’re crying. You don’t know what to do.

You don’t know what the future holds, but we found the Pitt Hopkins research foundation website. And I emailed the first person I saw and that turned out to be a woman in Audrey, in Los Angeles. And she runs the whole thing and she called me back and we started our journey to navigate through kid holidays.

Tom Couch: That’s Martin Cuevas, father of twin four year old girls. One of whom has Pitt Hopkins syndrome, which is incredibly rare. And Martin’s our guest on this data, dad podcast. Here’s our host David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring fathers that filled them with special needs presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network as a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs kids connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, to find out more, go to 21stcenturydads.org.

David Hirsch: And if your 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: So let’s listen now. As David Hirsch talks to special father Martin Quavis,

David Hirsch: I’m thrilled to be talking today with my friend Martin Cuevas.

Of crystal Lake, Illinois, a father of twin daughters, and a medical social worker who works in hospice Martin. Thank you for taking the time to do a podcast interview for this Special Fathers Network.

Martin Cuevas: Thank you for having me. It’s good to be here.

David Hirsch: You and your wife, Amy, you’ve been married for eight years into the proud parents of twin four year old daughters, Lydia and Isabelle, who has Pitt Hopkins syndrome.

Which is a deletion on the 18th chromosome,

Martin Cuevas: correct? Isabel was diagnosed with the syndrome at when she was almost one and yes, she does have a deletion to that part of her genome there, but it could also be a mutation and there’s other ways Pitt Hopkins could manifest, let’s

David Hirsch: start with some background.

Where did you grow up? Tell me something about your family.

Martin Cuevas: I grew up in Brooklyn, New York in the seventies and eighties, you know, I had an interesting dynamic with my family. My dad was 62 and my mom was 42 when I was born. Also, my dad had four other children from a previous marriage. So there was a 35 year age gap between myself and my siblings, which makes life interesting.

But I’ll. Always be grateful and they’ll always love them for being there. When I was first born and helping basically to raise me, you know, instant babysitters, my nieces and nephews were teenagers when I was born. So

David Hirsch: that’s wild. I also remember you telling me that your dad was like the first born out of a very large Puerto Rican family.

Martin Cuevas: Right. And from what I understand, he was first born of about 14 or 15 people back in 1911, which is a long, long time ago. They were all very. Prolific. They, they, they bred. So I’m pretty sure Puerto Rico is my cousin

David Hirsch: directly or indirectly

Martin Cuevas: brag. They absolutely that’s fabulous.

David Hirsch: So I’m wondering, what type of advice did you receive or important lessons did you take away from your dad?

Martin Cuevas: I guess the most important thing was I knew for sure that my mom and dad. Loved each other. And we’re going to take care of each other into the end. You know, my dad was older, so we got to spend some time together as father and son, mostly in the early to mid eighties, you know, we’d go to baseball games, we love the mats and then we’d go see wrestling matches.

But you know, when he got to his mid to late seventies, the decline started to happen. So I wasn’t looking for other father figures, but other father figures made their way into my life.

David Hirsch: Well, he was 86. He said when he passed,

Martin Cuevas: when he passed. Yeah.

David Hirsch: It’s not lost on me that, uh, he was 62 when you were born and I’m 58 now and I have five adult children ages 22 to 29.

And I’m not feeling young, so I can only imagine what it must’ve been thinking when you were born.

Martin Cuevas: He must’ve been exhausted cause I was a hyperactive kid, man. That’s a wild.

David Hirsch: Anyway. Thank you for sharing. I’m wondering what role, if any, did your grandpa’s

Martin Cuevas: play? So didn’t know my dad’s parents. Um, they literally have no idea who those people were, but my mom’s parents, my mom’s mom passed, I believe in 39, but her dad, my grandfather.

When it’s a 106 and he passed in 2011 ish, I believe 2007, 2011. And I knew him briefly, you know, I knew him a little growing up and towards the end, I would go and visit him in the nursing home, where he was still with us, you know, he had wants and desires and was able to communicate his needs and he was decisional and it was an amazing thing to watch.

He was fun to talk to.

David Hirsch: Yeah, well, 106. That’s not a world record, but that’s not going out on the door.

Martin Cuevas: Yes, it is.

David Hirsch: I’m hoping that in a positive way, you have some of his genes and that, uh, he might be with it, you know, for that period of time as well. It’s one thing to be old. It’s another thing to be, to be my manager, your intellect, and your physical ability

Martin Cuevas: as well.

So I’m

David Hirsch: wondering if there’s anybody else that served as a father figure when you were growing

Martin Cuevas: up. So that’s a great question. I guess it would have to be my friend Howard. So Howard, while I built and ran a very successful photography program and Abraham Lincoln high school in Brooklyn, it was so successful that it would win lots and lots of contest.

And we were very recognized. Everywhere. And he built it like a community. He literally built the structure from the ground up and it was a place where students can go and just hang out and be students and talk and create. It was a wonderful experience because he would mentor me and kind of guide me when I was pretty much a nameless teenager.

It’s still friends to this day. I don’t talk to him as much as I’d like to, but he was absolutely influential when I was a teenager.

David Hirsch: Yeah, what’s interesting when we stop and think back to different points in our lives, high school or college or beyond, and some of the influence that people have had either in a formal way.

No mentoring you or in an informal way, just the role model that they were in. It sounds like Howard wallet was one of those too.

Martin Cuevas: Yes, absolutely.

David Hirsch: So let’s talk about your schooling because from what I recall, you know, you weren’t really focused as a young person, but things turned around. When you joined the national guard.

Martin Cuevas: Yeah. And that was a long road. I mean, I wasn’t focused as an adult until that point when I was 37 years old. And it was my first day of basic combat training. But prior to that, I had just been living kind of a nomad lifestyle. I struggled mightily with drug and alcohol addiction for the better part of a decade and a little bit longer where I was drinking so much that I got pancreatitis and it nearly killed me.

Yeah. It was a scary time, but it was also a wake up call knowing that I needed to do something quickly to become an adult if I was ever going to become an adult. So yeah, 2009. I signed off and on January 10th, 2010, I was getting yelled at a lot by drill Sergeant. And it was a fun time. They used to call me private grandpa.

Cause I was one of the oldest enlisted soldiers there. Yeah. I think back to that, then I think I was out of my mind, but it was a good experience all around.

David Hirsch: Well, you did that. Because you want it to do it, not because somebody was correct as you do it. Correct. And what was the age difference between the youngest that would have been involved in yourself?

Martin Cuevas: Grandpa? I remember a kid. He was 17. Um, but there were a couple of other folks in their thirties. One was in his forties, but he was prior service. He was coming back in, but it was all new to me. You know, I had a romantic Hollywood notion of the military and. You know, it’s different, but again, it taught me a lot of great lessons.

I made some great friends. I wasn’t the best or the worst soldier, but I did my best as a medic in the national guard in New York.

David Hirsch: So if you had to think about one lesson that you learned, the most important lesson, what do you think of OBS?

Martin Cuevas: That’s a great question. Just teamwork, you know, as a medic, you have to be on your game and you were reliant.

On everyone else around you, that’s working with you. You know, I worked in an eight station mostly and, you know, we would get trauma cases coming in from being out in the field. And if we didn’t work together well, then, you know, soldiers, state injured or soldiers died, that kind of stuff. So I love being part of that team, but you know, it’s also, the army does a lot of stuff.

I didn’t love. That’s another, that’s another podcast

David Hirsch: that while there’s pros and cons to everything. Yes. And it sounds like it was a really important turning point in your life. You would not be the person you are today, had it not been for your God

Martin Cuevas: experience. I would agree.

David Hirsch: So I’m wondering what type of work experience you’ve had since going to the guard.

I know that you went to Hunter college, he had got an undergraduate degree in public health, and then you did a master’s degree here locally and social work.

Martin Cuevas: Yes. So my first job as a social worker was working with homeless veterans that needed to be reintegrated into society. I helped run a residential treatment program here in Hebron.

Illinois is called new horizons and it was an old motel. And we would get veterans who were on the street, the new, the place to stay and to get back on their feet. And so I helped with that for a couple of years, I dabbled in psychiatric emergency, which was a really fun job. A really important job. I think mental health wise and these days I am in medical social worker for a company called Heartland hospice where have a caseload of about 40 to 50 patients that I help navigate the hospice process with them and their families.

David Hirsch: So just to be clear, this is end of life,

Martin Cuevas: hospice end of life care, correct. 40 people. I believe, at least I think I got like three new people this week, but you know, this day to day,

David Hirsch: and this is end of life stuff,

Martin Cuevas: this is the place of death. So hospice, you know, as it relates with Medicare, because Medicare fits the bill for all hospice usually have about six months.

To live, if you’re going to be on hospice. And then after the fact, if you remain, then you have to be recertified, but yes, it is end of life care. And there’s all the struggles that come with. End of life care. Family dynamics is what I deal with the most. But since I also have a mental health background, I think I’m good working with patients at the same time, helping them navigate through.

But I do do a lot of work in memory care, Alzheimer dementia patients, and. That’s hard for me. That’s one of the hardest parts of the job walking into a memory care facility. But I gained strength from that and I, you know, I stay on mission and I carry on. Yeah,

David Hirsch: well, it’s impressive. I have just a very tangential understanding about what you do.

And it came from our personal experience. My wife, Peggy, and I lost three of our four parents and a five month period of time back in 2017. Hospice played an important role into other lives and what a godsend, hospice workers are like yourself, because it’s such an overwhelming can be such an overwhelming experience for the family.

Everybody is at a different point, you know, and their acceptance of their loved one passing and doing as much as they can. Some people want to be there every minute. Others just. Want to, but they can’t engage. And there’s all these, like you said, family dynamics that are, you know, coming to the surface and it’s a very overwhelming, or can be a challenging period of time.

And the fact that, you know, you are doing that on a day to day basis. This is what you do as a job. And you’re juggling what seems to be like 40 different family situations. And you know, that the end is near. Yes right. That it’s very few guarantees in life, but one of the guarantees is that we’re all going to die.

Martin Cuevas: It’s over. And it’s just

David Hirsch: a matter of how it went. And you sound like a Hercules’ from my perspective, not a slate to be able to do that on a day to day basis. You know, I don’t know how you. Discipline yourself mentally, or how you compartmentalize the work that you do. Um, so that when you’re not at work, when you’re with your wife, Amy, with your daughters, or when you’re with your friends, that, you know, it’s just not, you know, sort of gushing over

Martin Cuevas: well, Drugs.

I have a lot of mental health stuff going on at the same time. So I am not afraid to say that I take a lot of stuff to help balance my mental health issues. So it’s a tremendous help. Therapy is a tremendous help too. And I only started doing therapy once I went into social work school. So,

David Hirsch: so acknowledging that.

That is part of,

Martin Cuevas: Oh my goodness. Everyone should be in therapy, but again, another podcast.

David Hirsch: Well, I’m sort of curious to know, how did you and Amy meet

Martin Cuevas: Amy and I met on the interwebs on a website called okcupid.com. They both were at the end of our rope too, with the dating him. So this was at least what we tell each other was our last date on the site.

And we had. Uh, first time we met after chatting online, we went to a little tea lounge in Brooklyn and they hit it off immediately and hit it off so well that we married about three and a half months later. Oh yeah. I remember we were quick about it. There was a lot going on at the time. Like I was possibly being mobilized for deployment overseas to the desert, so we wanted to make sure everything was in place before I left.

Um, never happened. Because well reasons in the military, but. No. Yeah, we got married quick and we got married first at a courthouse with two of our friends. There was witnesses. And then we brought the family in and about 40 of our friends to a little comic book lounge in Brooklyn called Bergen street comics where I’d shopped for a long time.

And I knew the owners are wonderful people, Tom and Amy, and they let us have the space. And we had cupcakes and hotdogs and people got wasted on the video and we went to bars and yeah. We’ve got to walk back to our hotel. And that was, it was a great, wonderful time. My mom got to come out and everything.

It was great.

David Hirsch: That sounds like a very memorable experience.

Martin Cuevas: It is. And that was the day I met. My inlaws was my, was my wedding day. Yes. Yeah. So that was, that was fine. I picked him up from the airport and driving back for the wedding is when I got to know my inlaws, my mom, and loved Vivian, my dad in law, Tom and my sister in law, Robyn.

So who are integral? And we wouldn’t be able to survive out here in Illinois without them. I have great love for them and yeah. I hope I could show that to them on a daily basis, but I don’t know if I do.

David Hirsch: That’s fabulous. Thank you for sharing.

So let’s talk about the special needs community trust on a personal level. And then beyond before Isabelle’s birth, did you or Amy have any connections to the special needs community?

Martin Cuevas: No. Connections would be a strong word. I mean, I went to a K through eight. Elementary school. And, you know, there was a special ed program.

And I know one of my mom’s last jobs where she was a housekeeper for a residential home for special needs folks, but that was it. And I honestly don’t know if anybody had experienced prior the

David Hirsch: girl’s entry into the world was a bit precarious. Uh what’s the backstory

Martin Cuevas: backstory is it was not easy. For us to conceive.

So we needed to go more medically and more science routes. So we did IVF and we were a first time go, which we’re very fortunate to have been a first time go. Cause we hear pretty horrible stories about families having to go through this multiple times. And it was the first time go with twins, which was exciting and terrifying all at the same time.

You know, and thankfully Amy came out of the birth. Okay. But we knew, well, at least I knew because Amy was, you know, she was drugged up and I was just staring at her while they’re pulling babies out of her and stuff. But when Isabelle was born and she was twin a and when they took her out, they noticed that she wasn’t breathing.

So the twin ATM had to rush her over to the table. To deal with it basically. And I had to make sure that my face wasn’t giving away anything. Cause Amy was staring directly at me and I think it did a pretty good job, but Lydia was born and there were no issues. So that was the beginning of all of this, even though we didn’t know it because the hypoxia and hypotonia her not being able to control her breathing or eating is part of the syndrome and part of.

The developmental process that has stalled because of the syndrome.

David Hirsch: So where the girls premature?

Martin Cuevas: No, the girls were 37. Point two 0.3 weeks. Amy had to deliver a week earlier than planned because we had our last, um, perinatal appointment. They saw some stuff going on in the placenta, so they’re like, Hey, you know what, why don’t you just walk across the hall and go, well, yeah man, we were not ready for that.

It was a nice day. Remember, it’s a nice day. It was. March 18th the day before I had marched my last Saint Patrick’s day parade with my military unit. I don’t know why I remember those details, but yeah, they just walked us across the hall and the next morning at nine o’clock that it was a plan C-section and then, you know, His life before that and there’s life after that.

David Hirsch: Yeah. Well, obviously it’s one of those experiences gets etched into your memory and, uh, you know, it was the beginning, right? Everybody’s journey is a little bit different. And the fact that you were able to have kids is a blessing and you just have to interpret. What the facts are and do the best job you can with the circumstances

Martin Cuevas: we hope.

So we hope that’s what we’re doing.

David Hirsch: So what is Pitt Hopkins syndrome and how many people are impacted by it?

Martin Cuevas: Pitt Hopkins syndrome. It is either. And forgive me if I’m getting some of the semantics wrong, but it is either a deletion or mutation issue with one arm of the 18th chromosome, 18 Q. So with my kid, Isabelle, her deletion means that she can’t form or produce or establish a certain gene called transcription factor four and transcription factor four.

It’s what agent development and the stuff that she’s missing developmentally is that’s the whole reason. So yeah, early intervention, we need to do early intervention because we knew what about five or six months that she wasn’t developing as normally as her twin sister. And, you know, that was an amazing thing to have.

We had a litmus test. We had twin B who was developing normally in twin a. Was not, she just wasn’t reaching her milestones. And we had issues with pediatricians that weren’t taking us seriously and blowing us off. So we got aggressive with the help of my sister in law, Robin. And um, some other new local pediatricians and we started the process of neurology neurosurgery.

Every specialist we could find to try to figure out what was going on early intervention showed up and they clocked her at being pretty severely under developed. And, you know, in my heart of hearts, I knew that genetics piece was going to be the definitive piece for us to find out what was going on.

And it turned out that it was so after three months, wait to get into genetics. He did a microarray test and discovered that she had the symptoms of Pitt Hopkins syndrome. And that’s when life changes again, because her, I remember that I believe it was January 24th. We got the phone call from our neurologist and she was a lovely woman, Melissa.

Sorella. She hadn’t heard of it. She didn’t know what it was. Nobody did. She was like, you guys have Pitt Hopkins syndrome and she led us to the foundation and it all changed it. So as far as like a census, I believe, and I could be wrong. There were about 500 in the United States. I heard recently that there’s a one, 4 million chance of getting it.

Worldwide. There’s a few thousand. There was more than likely a lot more because the testing has become more robust and we actually get to meet a lot of the new folks because of the Facebook groups, social media, and the foundation itself, I guess, one of the best partner, best parts, but one of the happier parts about that night, January 24th is that, you know, you go to a website.

You start Googling you’re crying. You don’t know what to do. You don’t know what the future holds, but we found the Pitt Hopkins research foundation website. And I emailed the first person I saw on that turned out to be a woman named Audrey in Los Angeles. And she runs the whole thing and she called me back that night and they tried some more and we started our journey to navigate through Pitt Hopkins.

David Hirsch: That’s remarkable. So I’m wondering. What meaningful advice did you and Amy get early on? Was it that Facebook group that early intervention or was it a combination of that?

Martin Cuevas: Yeah, we were, we were blessed with early intervention and wonderful therapists. They treat for symptoms. They’re not treating for pain Hopkins looking for a cure or anything.

So they just helped us with helping Isabel get stronger. Basically we knew it was going to be a severe intellectual disability. So there’s not much we could do about that, except for trying to engage her in fine motor type stuff. Facebook group is the most active thing. There are about three different ones for Pitt Hopkins, some for just the families and parents, some for everybody, but we meet new families on there.

At least weekly, like, you know, by before this interview, there was another new family that popped up. And that’s a great thing because the family aspect of it is wonderful. I’ve gotten to meet a bunch of Pitt families and foundation. So it was these conferences about every 18 months and we all get together.

Is that just a wonderful experience to talk to someone who’s going through the same exact thing? Because I think there were six in Illinois and we know some of them, but. It’s not a lot, you know, it’s, it’s just not a lot. And thankfully the foundation brings people together and I’m so excited that they’re doing it in Chicago next year, which means I only have to drive for a little while instead of, instead of driving to Minnesota or Texas or something like that.

So

David Hirsch: how often do they have the conference?

Martin Cuevas: But every 18 months, the conferences are twofold. Part of it is science. So the foundation has. Opened a bunch of clinics around the country that are working on treating the symptoms and even curing the thing. So those guys show up and talk about their research and where they’re at.

And then, you know, when clinical trials are going to start and then the rest of it’s for the families to get together education wise support groups, which is a big deal. I was able to run the dad support group at the last one. And that was an interesting experience. I had not done that before, but I knew it was necessary.

It was just hard to getting guys to sit together in the room. They were all over the place and they were all very reluctant to be there. But once they start talking, they don’t stop talking. And there was wonderful, you know, guys are telling their most intimate stories and we didn’t want to leave, you know, and I’m hoping to be able to do that again next year in Chicago.

David Hirsch: So I’m thinking about some of the important decisions that. You named the man raising twins, including one with special needs. When it comes to mind,

Martin Cuevas: what comes to mind? Well, we knew we couldn’t do it alone. And living in Brooklyn, we were living in a one bedroom apartment. There was about 700 square feet.

Holy cow. Yeah, man. That’s not, we can’t go. No, you just can’t do it so blessed to have my inlaws that took us in here. In Illinois Lake in the Hills to get us started on the road to being parents. I wasn’t working at the time I was stay at home. Dad, Amy was the primary breadwinner. She remains the primary breadwinner.

All the medical stuff is what I handled. That was one of the big decisions we had to make. And then, you know how we’re going to do it. We didn’t know she had the Pitt Hopkins until about a year in. We didn’t know, especially what her symptoms were going to be. Cause every, every kid’s different. I met a kid that was walking and talking at the first conference.

And that’s one of the rarer cases, you know? I mean, we’re hopeful. We’re very hopeful that she’s going to be able to walk at some point, but she can’t walk yet. We’re hopeful that she’s going to be able to effectively communicate her needs. And that’s an issue that we deal with now. She doesn’t have much of a vocabulary compared to her sister compared to, I mean, her sister doesn’t stop talking her.

Sister’s talking to somebody right now and she will be. Forever. And we love that kid. She’s, you know, she’s advancing normally and even, you know, a little more, but with Isabella, we just don’t know where she’s going to wind up right now. She’s got no fine motor skills. So holding onto stuff and grabbing stuff is a struggle.

We deal with something else with her that isn’t necessarily related to Pitt Hopkins. It started off being diagnosed as benign paroxysmal torticollis. And it turned into, what’s known as cyclic vomiting syndrome, which is the nightmare of our life, because about every four to six weeks, Isabelle spends an entire day.

Vomiting. And we’ve got to deal with the symptoms for it. We do our best to abort, the episode to prevent the episode or our new medications. Every time she has an episode, but we had no luck. And it’s, it’s awful to see a kid who can’t communicate where it hurts. Yeah, it’s just, yeah, it’s the bane of our existence, but we’re doing our very best to try to deal with it.

We’re actually seeing a specialist in Wisconsin sometime in the summer who deals with it specifically?

David Hirsch: So on what I heard you saying, as far as one of the more important decisions was to relocate.

Martin Cuevas: Oh my God. Yeah.

David Hirsch: So they’re closer to family and you have more resources than you. Might’ve had a lot more room.

Martin Cuevas: You know, prices are different out here in the Northwest Illinois suburbs than they are in Brooklyn. And, you know, we were paying a lot more in rent just for that little apartment than we do for our mortgage for a four bedroom house right now.

David Hirsch: So I’m wondering, um, what not to focus on the nugget, but what have been some of the bigger challenges that you’ve encountered since the girls were born,

Martin Cuevas: just being parents, you know, dealing with her own mental health issues.

I guess, I mean, it started after 24 hours, Isabel was in the NICU in the ICU because she had stopped breathing again at one of her first assessments. So that’s an interesting dynamic because I’ve got, you know, my wife and my daughter upstairs on the third floor, my other daughter with an unknown, whatever it is down in the basement and the NICU.

And. For me personally, and this is, you know, I don’t know exactly what Amy was going through, but for me personally, that was, that was hard, man, going up and down the stairs and elevators and just staring at Isabel and not just knowing. And, you know, the Nikki was both a wonderful, and it could be a pretty horrible place, but she came out of it and we just dealt with the symptoms moving forward,

David Hirsch: like.

I can only imagine no you’re celebrating right. Your pants for the first time you got to cleanse twice the joy, if you will. And you’ve got this one child who’s typical, right. Things to be missed to be checking out and you know, it’s celebratory. And then you’ve got the anguish that goes along with the, Oh my gosh, what’s going on with her other daughter?

You know, it sort of seems like you’ve got these conflicting emotions, right? No doubt. That must be really challenging to reconcile all that.

Martin Cuevas: It was stated day, you know, day to day.

David Hirsch: Did you mention that there was some, um, medical bill issues?

Martin Cuevas: Oh man, there’s a story for yourself. We did IVF right through a hospital in Brooklyn and we were told.

That it would have been covered by our insurance. So they gave us an option. We could have gone three different routes. So we said, IVF, if it’s going to be covered, let’s do it. So three days after he made his birth, Isabel stolen NICU, I got a bill in the mail for $29,000 a month from United healthcare.

Good times dealing with everything else. And then seeing that I couldn’t even tell Amy would have not survived me telling her that that happened. And I spent the next year fighting tooth and nail with United healthcare for them to pay for it. And they just magically reduced the number down to 9,000.

Then the fight was over. So we just paid that, but that was not a fun day.

David Hirsch: Wow. I told her that individually

Martin Cuevas: for a year because. That wouldn’t be good for my wife too. She’s just amazing. Yeah. Yeah.

David Hirsch: Yeah. I think he remember him mentioning that one of the biggest challenges was the initial pediatrician. Yeah.

And I don’t want to name anybody, but if you could call the experience, so other dads should be empowered right too. Evaluate their situation as well.

Martin Cuevas: Sure. So I hear this a lot, especially from the other Poppins dads and moms and the families that, so, okay. It’s five months we see it’s happening, you know, she’s not developing, so we would take it to the pediatrician and pointed out.

It’s like, look, look at this kid, look at this kid, something something’s off. What could you suggest? What could we do? And we were blown off. Like the guy was laughing at us almost like, Oh, It’s fine. She’ll catch up. Yada, yada yada. And I mean, I’m so angry. I didn’t know what to do. He didn’t even try to help us.

Cause there are ways to help. I mean, even he could have at least mentioned early intervention services that could come and do an assessment, but that never happened. So once the anger wore off, that’s when we got hyper-focused and aggressive to try to fix it, you know, we finally got a good pediatrician who recommended.

The neurologist at Lurie, children’s in Chicago and that’s when it all started. But man, like you have to take control of it. If you think something is wrong, no matter what, no matter who you pissed off, no matter what, like he just had to do it. I mean, we never went back to that place, thankfully, but.

Because of that, we found great places to go. We love our nurse practice or pediatrician Amy, and we love all the help we’ve gotten from Lou children’s.

David Hirsch: Well, thank you for sharing. Um, and sometimes you do have to pivot. You have in a situation, you know, it’s just not right. Maybe you don’t know exactly what to do, but you need to make a change of some nature.

Martin Cuevas: So

David Hirsch: I’m wondering what impact has it been a situation has had on Lydia? If there’s been any impact on other girls we’re still super young.

Martin Cuevas: Yeah. And Lydia out, we know Lydia knows about the difference and sometimes it could be an issue because, you know, Lydia needs a lot of attention and we are always hoping that we give her enough of what she needs.

And I don’t know if I do specifically, you know, I never want to stop trying to be a better dad, you know? And the kid is so smart and the kid has such a bright future ahead of her. I want to make sure that I’m going to be there for her, but Isabelle has so many specific needs that she’s, she’s one-on-one care all day.

Like, you know, we’re able to leave her for a little bit in front of the TV, watching some of her favorite shows, but otherwise you gotta be near Isabelle to do stuff. And what effect that’s having on Lydia. I don’t know, she gets frustrated. She cries, she gets angry four-year-old stuff, but she also says that she loves her sister and she knows her sister is different.

And, you know, she knows when her sister gets sick, we have to focus on her. So, you know, not a big reason why I’m in therapy. I want to make sure that the dad part is working. And if there’s any tools I need to learn about that, hopefully therapy could help me out with it.

David Hirsch: They will thank you for being so forthcoming.

That’s a unusual. At least from my decades and decades of experience advocating for. Kids and dads, my almost three decades of being a dad, myself, to have somebody as transparent as you are. And so open and honest with yourself, right. And be with others. Right. What a great role model that is. So thank you again for sure.

I end up, you know, there’s the, what I think of it as divide and conquer strategy, which is at some point, you know, spending more one on one time with video. Right. Will become more and more important because

Martin Cuevas: a big father’s day plant just me and Lydia. Okay. I’m very excited for that. We would go to a white Sox game.

We’re going to go to Shedd aquarium, and we might even go to the movies if we’re not exhausted by it. That’s just going to be from one of the first times, just her and I. So I’m very excited for that.

David Hirsch: Yeah. Just creating little traditions around whether it’s father’s day or just the different experiences.

So I’m wondering what a supporting organizations you relied on for Isabelle.

Martin Cuevas: Or

David Hirsch: individuals for that

Martin Cuevas: matter, lots of individuals, lots of people. It’s a ginormous village of folks that help us first was early intervention services. So Liz, Robin, Dana Deseret from options and advocacy that came in and assessed Isabelle and are still helping us with therapy for the kiddo.

There’s a place that we go to and locally called. Milestones. And this is a giant therapeutic center for kids with special needs. And Isabel goes to there for her swim therapy. We were blessed with this angel. Her name is Marianne, and she runs an in home daycare and she has a couple of special needs kids in there.

She cares for Isabelle all day long. And, you know, we, we’re consistently humbled by that woman and how much she loves kids. It’s a seven minute drive from our house. Um, we’ll care for Isabelle when she’s sick and we have to work can not say enough magical things about Maryanne.

David Hirsch: I think you mentioned too, that, uh, Amy’s parents are

Martin Cuevas: absolutely, um, If we can’t do it without them, we just can’t.

They were about a 10 minute drive away and Lake in the Hills. And, you know, Isabel, couldn’t go to her therapies without mom. You know, we couldn’t have time off just to be husband and wife without mom and dad. Yeah.

David Hirsch: What are some of the things that you and Amy have done to maintain some balance or. Sadly for that matter in your situation,

Martin Cuevas: we have to have at least some time during the week for ourselves to do whatever it is we have to do.

I like to play the guitar and I like to just be out in nature. We both actually for the holidays, got each other, the gift of transcendental meditation. We went to a four day learning course and Amy’s much better at it than I am, but that has helped. That’s an amazing thing to him, recommend it to anybody.

And then, you know, our date nights this weekend, we’re going away for just tonight. To spend some time away from the children and away from work away from everything. You know, we both worked full time. It’s important that we have that time and we couldn’t have that time without her parents. So we’re all, we’re forever grateful.

David Hirsch: That’s fabulous. I think grandparents playing an important role, an increasingly important role in society because of the breakdown of the family, not your family, but I’m just talking more generally, you know, a lot of women are raising children. That’s the whole reason we created the 21st century dad’s foundation

Martin Cuevas: and they understand the L the illness they’re still supportive of Isabel and Lydia for that matter.

So we love them very much.

David Hirsch: So I’m wondering about the special needs community and Pitt Hopkins. Community. You’ve talked about the foundation, but that’s run by Audrey out of LA. They put on conferences. What else did they do?

Martin Cuevas: Recently? We got to fly down to Atlanta for a special interdisciplinary clinic thing.

And, you know, eight families were chosen as like a trial to just get eyes on it by some different doctors. So that kind of stuff happens when they’re able to raise money to do it. Lots of fundraising for the foundation goes on all year round by a lot of the different families. It’s just the community and the support that the community gets mainly through the Facebook group.

I’ve met so many wonderful people at the conferences that I get to keep up with the Facebook group. And I know they’re doing a lot more behind the scenes. Not. Exactly sure what that is, but I know that it’s nonstop trying to fix this, this disease. Yeah. Well,

David Hirsch: thanks for sharing. Um, it sounds like it’s been a lifeline for so many families and an increasing number who are getting the diagnosis and being able to tap into this resource, whether they’re here in the U S or beyond.

And I think that’s one of the real. Powerful things about social media, Facebook in particular, in this situation.

Martin Cuevas: So I’m

David Hirsch: wondering under the banner of advice, if there’s some important takeaways that come to mind when raising a child with differences,

Martin Cuevas: be as open and honest and communicative with your spouse as possible.

Lots of new and interesting dynamics happen. Just when you become parents, but add the extra special needs piece and you just don’t know where it’s going to go. Like, you know, you don’t know where the feelings are going to be when there’s one person handling medical and one person handling money, like that’s, it’s a dynamic that you can’t prepare for and they could be toxic and, you know, getting out of it could take a lot of work.

I keep pushing therapy, but therapy. Just cause I have a mental health background is so important to be able to sit and to speak with a neutral human being that has no real stake in your life except to help get you better. It’s hard to describe how good that is for everyone. And I know how hard it is for dads too.

I’ve seen it like I’ve seen dads not be able to be vulnerable and to kind of break down that veneer of being the tough guy, breadwinner, whatever it is and let somebody else handle it. You know this about. A million more moms groups out there than there are dads groups. And, you know, that’s just the state of the game.

And hopefully organizations like yours will help kind of break that veneer a little bit and get guys out, get them talking at least open up don’t hold don’t hold back. If he can. Great

David Hirsch: advice. Thank you. So I’m wondering what advice can you share with dads or parents for that matter about helping a child with disabilities reach their full

Martin Cuevas: potential.

Always assume that they’re going to make it to the next milestone. Never hold back because you don’t see it right now. Like, you know, we will never stop working towards Isabelle, being able to walk. You know, it’d be very easy for us just to give in and be like, Oh, this is just our life. You know, we have no idea, but we’re not going to stop finding new therapists, finding new doctors, figuring out a way how we’re going to make that happen, to make sure that kid has the best life she can have.

We’re not going to be around forever. So there’s the matter of setting up a trust and trying to figure out where a human being that needs one on one attention all day long is going to live. And I’ve actually seen some of that being a social worker here in Illinois. And it’s heartwarming to know that there are places that are safe.

Where people like Isabel will and can be cared for.

David Hirsch: That’s fabulous.

Martin Cuevas: So

David Hirsch: I’m wondering why is it that you’d agreed to be a mentor father as part of the special father’s network at such a young child? I had a four year old.

Martin Cuevas: I don’t know. I’m tired all the time. I’m not making a lot of good decisions, but I don’t know when I met you guys back at the children’s museum, I knew I’d, I’d been wanting to do something.

I just didn’t know where to start. Like when I ran that group for the Pitt Hopkins conference, it felt good to be able to get guys to talk about what they were going through, you know, going to school for what I went to school for. It helps tremendously. I know what it is, man. You know, I know what these guys are going through and I’m always happy to talk about it.

I never hold back. At least I don’t think I hold back. So

David Hirsch: while we’re very thankful to have you as part of the network, um, I think you’re already doing what we’re talking about, which is. Train younger dads, like when somebody first gets the diagnosis, right. You’re three years plus ahead of them. And it doesn’t mean that their child was diagnosed at the same age as Isabelle, but, you know, from a, where are they at mentally?

You know, as far as their understanding about what’s going on, the confusion, uh, you know, the uncertainty of it all, you know, it, it doesn’t take you long to get back to that place. Cause it was not so long ago that you were there to be able to relate that experience. Yeah. So I think it’s tremendous that even though you have young daughters that you’re willing to step up and be the mentor, and let’s be candid with one another.

There are dads who have a decade or decades more experienced than you, maybe not dealing with get Hopkins, but something similar enough to put up guns where you would benefit as well, having them come alongside you. And so you’re in sort of that middle group of dads that are willing to be the mentor themselves.

They have enough experience, but you have so many years ahead of you as far as your father. They’re right there. I’ve been a dad for almost three decades, right? 26 years longer than you. I don’t know of what value I can be, you know, based on where you’re at, other than just, you know, somebody who is just a staunch advocate for dads, doing whatever they can do to be involved in their children’s lives and helping connect the dots.

Right. It’s not me. Maybe there’s some other dads within the network that, you know, you might, uh, you know, align yourself with. So let’s give a special shout out to our friends at the Cole children’s museum. Absolutely. They’re helping introduce us through their quarterly program, where they host families, raising children with special needs,

Martin Cuevas: very good program.

We enjoyed that tremendous. That’s where there was another pit family that was with us. They lived down by midway and we got to hang with them for the first time Monica and her son, Emilio. Who’s got Pitt Hopkins just about the same age as Isabelle, stuff like that. It’s magical, you know, it just doesn’t happen, you know, happens maybe once or twice a year.

So. Yep.

David Hirsch: That was very memorable experience. Is there anything else you’d like to say before we wrap up?

Martin Cuevas: Um, thank you very much. I think what you guys are doing is awesome and I’m very excited to be a part of it

David Hirsch: while we’re glad to have you. If somebody wants to contact you once information on Pitt Hopkins about reaching out to the therapy community, how would they go about doing that?

Martin Cuevas: I would go go on the Facebook group, do a search for the Pitt Hopkins research foundation. I’m there a lot. And it’s not just me. They can reach out to, but my name’s Martin Quavis C U E V as in Victor, A S find me on there and I’d be happy to talk. Great

David Hirsch: Martin, thank you for taking the time and many insights.

As a reminder, Martin was just one of the dads. Who’s agreed to be a mentor father as 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, a father, or are seeking advice from a mentor father with a similar situation, do your own.

Please go to 21stcenturydads.org. The 21st Century Dad’s Foundation is a not for profit organization, designed to inspire dads to be more engaged, physically, emotionally, financially, and spiritually. If you believe the work we’re doing is valuable, please be sure to leave a five star rating and review.

As well as sharing the podcast with others, as well as make a tax deductible donation. So we can continue to offer this free service to young fathers, raising children with special needs. Martin. Thanks again.

Martin Cuevas: Thank you.

Tom Couch: And thank you for listening to the dad to dad podcast produced by couch audio for this Special Fathers Network, the special fathers network as a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs kids.

Connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, 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: If you enjoy our podcast, be sure to like us on Facebook and subscribe on iTunes or wherever you listen to your podcast. I’m Tom Couch. Thanks for listening.