Raising Autistic Boy/Girl Twins with Chris Decent – Podcast 302

Joe Rawlinson by Joe Rawlinson - May 23, 2024

Episode 302 of the Dad’s Guide to Twins Podcast Show Notes

Today we continue our father of twins interview series with Chris Decent, father of boy/girl twins. Listen as we explore his twin parenting journey, including:

  • Older sibling’s concerns transforming into wonderful big sister
  • Going through multiple failed adoptions before getting the twins
  • When one twin spent 4 months in the NICU
  • Selling their home right away after birth to move closer to the hospital
  • Deciding to have Mom stay home with the kids
  • Discovered about autism after twins were missing milestones
  • Having each child at different levels developmentally
  • Getting special needs children into school that matches their needs
  • A child’s tantrum vs autism meltdown
  • Sleep challenges with twins
  • When twins don’t look alike
  • and more…

Connect with Chris via email for any questions about ASD.

Podcast Transcript

This is transcript auto-generated so please forgive any mistakes.

Today, I’d like to welcome to the show Father of Twins, Chris Decent.

Welcome to the show, Chris.

Thanks for having me, Joe.

(RELATED: Check out the Dad's Guide to Twins Youtube channel for additional helpful twin tips and tricks videos.)

Chris, how old are your twins right now? What’s something exciting about this age?

They will be six in about a month at the end of February. And I think what’s most exciting right now is just seeing how they get interested in things, whether it’s trains or cuckoo clocks, which my son is currently in love with. Just kind of seeing how their brains work and what is most interesting to them.

That’s fun to watch them. And you’re into like, they’re turning into little humans and they have different interests and stuff. That’s pretty exciting.

Feel like we’ve been in the survival phase for a while now. My twins both have some special needs that we’ll talk about a little bit today. So that’s been another thing that’s been interesting is although they’re twins, my daughter is developmentally probably about a year behind my son. So in some ways, it feels like déjà vu. We keep going Groundhog Day, going through the same things, but it’s been quite a wild ride.

Are they your only children?

I also have an 18-year-old who’s a freshman at Mississippi State.

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Fantastic. So that’s Bulldogs, right?

That’s right. And she’s the best big sister ever. Part of our story is that we actually adopted the twins at birth. And my 18-year-old set up an Instagram account for them that’s called Decent Double Trouble. And it really just kind of is a way to follow their story and all the things that they’ve been through in the last six years. So her name is Claire, and she’s the best big sister anyone could hope for.

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Great. It’s always good to have an extra pair of helping hands, especially when they’re like, she was obviously old enough to help when the twins came home.

She was. She doesn’t live with us full time, but she’s here all the time. And, you know, it’s interesting too, as part of our journey that, when Claire was writing her essays to get into Mississippi state, she was awarded a very prestigious scholarship at Mississippi state. What she wrote about is the twins and how her life has changed.

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And I’ll never forget the opening line to her scholarship essay. It starts by saying, “Will I get enough presents? Will I have to share my room?” Those are the first thoughts that went through her head when I called to tell her that she now had a brother and sister. And she just talks about how she was a little bit selfish as a 12 or 13-year-old kid and how the last 5 and 1/2, 6 years have really changed her world and how Cooper and Scarlett have really changed her view of the world. And as a dad, there’s nothing that warms my heart more.

That’s great. That’s great to see her evolve in that phase as a big sister. I know we have two boys, we had two boys before our twins were born, but they were too young to express what you just said Claire expressed to you, right? They were surely thinking something like, am I still going to get attention? Am I still going to get everything they need? But they couldn’t articulate that. So that was pretty cool that she was able to.

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Well, you know, it’s always been amazing to me is how she, when I, you know, I didn’t see those words or her put those words on paper until about a year ago. And for me to think about, wow, I had no clue you had those thoughts when you were 12 or 13 years old. It’s just, it’s such a reminder that our children see and hear so much more than we ever think they do. And they have their own thoughts, whether they articulate those to us in the moment or not. But what we do, what we show them, how we’re there for them, all those things matter. And she’s a great reminder of that.

Absolutely. You mentioned that you brought the twins home. You adopted them at birth. So how much advanced notice did you get before you knew you would be having twins?

Quite a bit. We had a long journey to grow our family. We had multiple rounds of IVF that did not work. And actually, we had multiple failed adoptions. And that’s something that people don’t talk about a lot. We had more than once we went to the hospital expecting to bring home a child, and the birth mother changed her mind.

And every state’s a little bit different. In the state of Florida, once a child is born, then in order to sign adoption papers, I think it needs to be 48 hours post birth and a certain number of hours off of any medications. And so we had the life-changing experience of having some birth mothers change their mind. So when we were actually paired with the birth mother of our twins, we made the hard decision not to tell anybody in our life.

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We had been through some really hard times. And so we were paired with her for about four months prior to the twins being born. So my wife and I were preparing and nesting and doing all those things. But nobody in our life knew until we called them. And we didn’t call them until the adoption was finalized. So two days after they were born, we got to go through that experience of calling friends and family and saying, “By the way, we now have twins.”

And a part of our story too is that my son Cooper came home immediately at that two-day mark, and his sister Scarlett stayed in the NICU for four months. She was born with a congenital diaphragmatic hernia, which is what we’ve learned a lot about in the last five or six years. But I would just say that she requires a surgery and an extensive stay in the NICU.

So as we started to share with the world, we brought Cooper to my parents and my in-laws and said, “This is your grandson,” and we had to share pictures of Scarlett for those four months until we brought her home. That’s quite the prize. You have the twins, and you’re probably expecting to bring them home shortly after their birth, and then you have some complications or they’re separated. How did you manage that kind of logistics of when your son’s at home, your daughter’s in the hospital, probably have, you know, work responsibilities, all that stuff. How do you balance that?

Yeah, when I, when I think back about it, my wife and I were just talking about this the other day, I think it’s a great parallel to just being the parent of twins. I think you just do it in the moment. Now when I think back about it five years later, I don’t know how we did it. I do know that we were told about a month before my daughter was born that she had this condition and required a surgery.

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But we were told by the surgeon that she’d be in the hospital for about two weeks and then she’d come home. Well, that two weeks became 123 days. And my wife and I slept at the hospital for almost all of those nights. And we somehow shuttled back and forth. One of the first things we did is we put our house immediately on the market. We sold it in about two weeks because we knew we needed to be really close to the hospital. We knew that in our hearts.

And we rented a house right downtown, Jacksonville, near the hospital. And that helped to be just five minutes away. But when you ask how we did it, I really don’t know. I think it’s just a great example of you just do what you need to do for your kids. I often laugh about thinking about when we finally did bring Scarlett home, I can only imagine what Cooper was going through Cooper’s head at that time because he hadn’t seen his sister literally in four months and they had been together in the womb all that time.

So someday I hope to, I know we’ll never know the answer, but I always joke that when she came home, he said, “Where have you been all this time?” I think you make a great point there how you just you kind of figure things out, you adapt, you roll with it. You make some changes, you may I mean even made big changes like that’s completely solar house and move.

As a dad, as parents, I mean sometimes you just have to take whatever action is necessary for the best. You know the best outcome for your family. So at the time, I worked at a local university that was very understanding. Like I said, we tried to spend as much time as possible at the hospital with Scarlett. My wife at the time was a recruiter in healthcare, working remotely.

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And not long after we brought Scarlett home, she made the decision that she needed to stay home full-time with the kids. It’s something I’m grateful for her every day. I don’t know how she’s done the last five and a half years at home with them, but I know that there was a significant amount of intervention and therapies and just care and love that they needed that one of us needed to stay home.

And she’s taken that on last five and a half years, and I’ll, I’ll forever be grateful for that. Yeah, that’s amazing. I know there are, there’ve been some other complications down the road developmentally with your twins that obviously require a lot of extra hands-on attention and involvement. So that’s great that she can be home with them.

Let’s talk about some of those other challenges that you’ve had with your son and your daughter. You mentioned that they are on the autism spectrum. So how did you even discover that was the case with them?

Yeah, so when I think back, two years old was really that trigger for us. I think up until two, a combination of the fact that they were younger and you typically don’t get the diagnosis until you’re a little bit older, a combination of that and all the time that we spent worrying about Scarlett and her medical condition.

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When we think back, we often say, we kind of let Cooper do his thing. And then one day we woke up, it felt, it feels like he was one and a half, two years old and we’re like, I’m not sure he’s meeting his milestones. And I think in our guts, we probably thought that before. And my wife and I are definitely type A’s that want to jump on and fix something if there’s a solution, right? Whatever that is.

And so we were blessed at the time that I worked at a hospital in fundraising at a foundation at a hospital. And so we got access to some services immediately and had both children diagnosed as being on the autism spectrum. I think it was probably more of a shock for us with Cooper, with my son, because he hadn’t had any challenges.

My daughter’s medical condition doesn’t necessarily lead to autism or anything, but we knew that some of what she went through could delay her. So I think the fact that it was autism just happened to be the thing with her. Then as we found out that my son had the same diagnosis, that was definitely a jarring moment for us to hear that. I think you want your kids to have the best life they can have, whatever that means.

And we still make the effort every day to make that happen. It’s just, it’s been a different journey for sure. In trying to figure out what therapies do you need? What schools, you know, you know, do you need different aids or different help for things? And our goal has always been, give them as much support as we can at an early age, ’cause we know that makes such a huge difference.

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So logistically, what does that look like? As far as, you’ve found some extra help that they need, and does that involve them going someplace on a regular basis and stuff happening in the home, what does that look like?

Yeah, so there’s different schools of thought about this out there, but we definitely prescribe to ABA therapy for our children as it relates to their autism, especially my daughter. So ABA is Applied Behavioral Analysis. It’s a form of therapy for children with autism, and it really focuses on getting them to comply with understanding compliance first before you can move on to teaching them things.

And that’s worked wonders for my daughter. She has an ABA therapist that comes into our home and also follows her to school. She goes to school about three hours a day to, you know, what I’m gonna call it a school, but really more of a developmental center that’s really just focused on kind of meeting her where she’s at.

And, you know, since the twins are almost six, they’re not fully matriculated in the school system yet. We’re probably about a year away from that with kind of some of their delays, but that’s where I think Scarlett is. I could see her matriculating more fully into school next year. And really we take it on a year by year, month by month basis about where she’s at.

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Does she need extra support or has she overcome some of these things? ‘Cause some of the things that really hold the kids back are things like speech-related challenges. And our hope is that that continues to get better over time and then they’ll be able to better articulate what it is they’re trying to get at and they’ve made great strides.

Cooper does go to a school. It’s kind of a quasi-clinic school for children with special needs. And he goes 8.30 to 2.30 Monday through Friday. And I’m a proud dad who’s sitting here today to say that he’s done three days this week in a row in the car rider line. And that was a huge accomplishment for our family. So I drop him off at 830, and his aide comes out and gets him and takes him out of the car, and he’s happy as can be. And I pick him up at 230. So that’s a win, and everything for us is pushing towards how can we get more matriculated into the school system or whatever they need. And again, I can see that happening over the next year.

Sounds like they’re making great progress. How does their autism affect maybe their interactions with you at home or their interactions with each other on the home front?

Say autism has made us rethink and relearn everything we thought we knew as parents. So when I think about my 18-year-old, when she was the same age as the twins, if she did something wrong, we punished her in some way. And I’m not sitting here to discuss what different versions of punishment people use, right? But we’ll just say, you know, whether it’s even just, you know, raising your voice to your child or looking at them in the eye or sending them to their room. I’ll use those as examples. Right. For a neurotypical child, that’s how you parent. That’s how I learned my entire life. That’s how I was parented. Or a children with ASD, a child on the spectrum. That does not work. That is not going to help them. And another example I would use is if you’re out in public at a store and your child wants a piece of candy in line and they start throwing a tantrum, right?

So do you have children yourself? When I think about my 18-year-old, she threw tantrums at the kid, right? But what none of those children have had is an autistic meltdown. That is something completely different. And too often, people will see an autistic child, what you think of as acting out in public and think, “Well, why can’t their parents handle that?” What I want to get out there to people is that understanding the difference between a meltdown and a tantrum. So a tantrum is responding to denied access. So your child wants Cheez-Its, you don’t want to give them Cheez-Its, they throw a tantrum. That happens to all children. and not. A meltdown is something completely different. A meltdown sometimes doesn’t have a reason, but the child cannot see clearly at that point. It has gone so far beyond that. So that’s been quite a learning experience for us, like I said, to have to literally relearn all the things I thought I knew about parenting and to understand. So to answer your question in short, I would say it affects every part of our life. It affects what places we choose to go, who we spend our time with, how long we can stay at things. And I would use the example of birthday parties, right? When Claire was little, we’d go to a birthday party for a friend or family member and you’d be there for a couple, two, three hours, right? Probably done that a hundred times. When we get invited to things now and I think about going, we might only be there 15 minutes. We might only be there an hour. We really try to meet our children and their needs where they are and, um, get them in the best place possible.

So do you, uh, you just play, you play off the cues that your children are giving you as far as how long you stay somewhere, what the next steps are?

We do. We also, we try to be really prepared in advance, right? So, um, again, to use this example of going over to somebody’s house for an event or a party or the, you know, before the twins were born, I would have taken Claire and if she said, “Well, I don’t want to go,” I would have said, “Well, we’re going,” right? Or, “This is your grandmother’s birthday party,” or “This is your…” And now, if we wake up in the morning and we can see that the twins are not regulated that day, and that could be for a number of reasons. It could be they haven’t been outside enough, which is an important regulation tool for them. It could be that they didn’t sleep well the night before. We really struggle with sleep in my house, which is a typical ASD thing. It could be for a lot of reasons that we wake up that next morning and we say, “It’s just not the right decision for our family to go.” And so I think that’s been the hardest part for me personally is relearning everything I thought I knew. And then the follow-up to that is helping educate friends and family members about those things too. I mean, you have your child over at your parents’ house or a family member’s house and your child starts screaming or acting out. Again, everybody wants you to parent the way we think we all know how to parent. And I’m so grateful to the family members who have learned about our kids fast and provide things like safe spaces for them to go in a quiet room or understand that when we come in your house and you open the door, if you do what you’ve probably done your whole life and say, “Wow, great to see you, Joe.” And it’s a big hug and you’re excited, that could trigger my family. So if you want to be an advocate for our family, if you want to understand our kids, then you need to understand you open the door quietly and we just see how things go.

That’s great. You have a good network of family and friends that understand and are able to accommodate and help you feel comfortable then you know the best in the situation that they can.

Oftentimes twins behavior plays off of each other because they’re always together, they grew up together. Do you see that in the case of your son and daughter as well or if one of them may be triggered in something the other will follow suit or are they kind of independent?

Yeah so we used to think of them as independent but now what we see is and I don’t know if this is a sister following her brother. I don’t know if it’s that she’s just a little bit more delayed than he is, but now I feel like He does something and then a year later she starts doing it Um things like turning on and off all the light switches in the house, right? When we got through that phase with him I remember thinking hallelujah and And then we had to go through that phase with her. Um, I also see things like He likes watching trains on TV and airplanes and I see her gravitate towards those same things. But I think probably one of the most rewarding things for me and my wife has been in the last year or so is seeing them start to play more together. Starting to see them even in the last couple months now they want to play hide and seek. They’re really bad at it. Okay, they’re okay at the seeking part. They’re really bad at the hiding part. But just hearing them say, “Hide and seek.” You know, “Play, hide, and seek” is really, it means so much to my wife and I, and they get so much joy from it. So I love seeing that, and I do see them starting to play off each other more. I also see them doing typical things like irritating each other. One has an iPad, and the other one snatches it from them. As much as I want to be upset in the moment, more than anything, I’m happy that they’re doing something that any two six year olds would do. So that’s just some of the things that we go through.

So is that implying that not too long ago, they weren’t really playing together or interacting with each other?

They weren’t really. I’d say for the first few years, maybe even the first four years, they almost ignored each other. And I always wondered, once we realized that autism, was it Was it that? Was it her medical conditions? Is it the fact they were separated for the first four months? I’m not sure and we’ll never know exactly what the reason is. But over time, they started to like each other a little bit more, even to the point where we would sometimes find him sleeping in her bed next to her if you saw her taking a nap. So I think those are things that, again, really warm our heart. But when I think about my twins, they’re, gosh, we try to parent them similarly, but boy, they are different people. When you think about the autism spectrum, I think they’re really good reflections of opposite ends of that almost. So my son is very non-traditional in the sense that if you open the door and started screaming, he would scream too. He would love it. He’s exciting. He wants to hug you. He wants to hang out with you. He wants to high five you. His excitement level is 11 out of 10 all day long. He never turns off. My daughter is more traditional, what people think of when they think of ASD, in that you might open the door and she might ignore you for a while. It takes her a little bit longer to warm up to you. She needs to, you need to build trust with her. So we definitely see that in them and in being so opposite. And so when they do anything together, it’s a home run in our house.

Did they share the room together or were they separate?

As we look at moving our family, which we’re going to be doing here in the next few months, we’re talking about maybe putting them in the same room. It’s a scary proposition. When we brought my daughter home from the NICU, there was really no option. She came home on oxygen for the first two years of her life and we were constantly tending to her medical needs. So she really needed her own space. Now, when I think about putting them together, I think about how long would it take for them to stop irritating each other so much that they would actually sleep. And like I said, we’ve gone through a lot of sleep challenges and are right now with the twins. So it is something that we’re considering, but we have not done it to this point.

You mentioned sleep challenges and those come in all different flavors. What have some of those been and like what are some successes that maybe you’ve had or or some things that you found that have worked?

I think our sleep story is probably as bad as anyone’s. About a year and a half ago, my son just stopped sleeping through the night. And up until that point, he had, it had been like our biggest win as parents is that you put Cooper to bed at like 7.30 at night and he sleeps till seven o’clock in the morning. We tried the mom’s on call method with him and it worked. And then he went through, I guess, what they call a sleep regression. And sometimes those are more severe when you’re dealing with an ASD diagnosis as well. So Cooper still goes to bed around that seven, seven 30 timeframe. He pretty much wakes up every night like clockwork, anywhere from 11 p.m. to 1 a.m. And what he wants at that point is one of us to go in there and lay down with him, comfort him. So we’ve kind of trudged through that best as we can. We often joke that I haven’t gotten more than four hours dedicated sleep and as long as I can remember and I think that’s true. But honestly last night, I’ll use this as an example, Cooper didn’t get up till 5.30 and that may be jarring to some people and that was a home run in my house for him not to be up for the day till 5.30 I think partially because of his ASD, oftentimes when he wakes up, his brain is going so fast that he’s up for the day. Scarlett is a little bit better sleeping through the night and a little bit worse at going to sleep at night. We have tried some medications to help Cooper sleep and we’re still trying to figure out what’s best for him. Scarlett, we often say that, you know, when we put Cooper to bed, that’s Scarlett party time. She gets to be an only kid for a little bit. So I’d say she typically goes to sleep a little bit later and is more likely to sleep through the night. But the entire house is better. Everybody’s mood is better. Everybody is nicer to each other. If Cooper could, if we could get Cooper to sleep till six, two nights in a row, I would throw everyone a party.

Do they wake each other up? I mean, if one of them is sleeping and the other one’s wide awake, ready to go. Is that ever a challenge?

So we have Jack and Jill rooms for the kids, is kind of the setup and we’ve seen less of that. So that was a challenge to start with, is Cooper would wake up and he’d immediately go into his sister’s room and throw in all the lights. That was a phase that we got through and knock on wood, I hope we’re done with. Now more often what we see is he comes out and he’s looking for mom or dad to come comfort him and lay in bed with him. So, you know, we made some accommodations. I, again, no, no judgment. I, we never did any co-sleeping with our kids, but we’ve had to adjust that for Cooper. So we put him to bed at say 7 30, lay in bed with him for a minute until he falls asleep. And then we leave. And then typically when somebody goes in with him at 12, one o’clock at night, you’re in there with him until he, till he wakes up for the day. So that he’s not constantly getting up and coming back out. So we put it, moved to Queen’s size bed it was room as an example. So there’s room for us to get a little bit of rest. And to go back to your original question, you know, what changes have we made? I’ve adjusted my own sleep patterns. And so has my wife that three, four hours, it’s us there sometimes. That’s what our kids need.

Well, that’s great that you’re able to adapt. I mean, adjusting to what’s working, what’s not working and just trying to make it through, you know, sometimes you just have to make it through each day, one at a time. So it’s obvious that you have a great love for your children are able to provide the things that they need and adjust to their challenges, which is not an easy task for any parent.

If you look back at, um, you’ve got these challenges of, of your children being with autism and they’re also twins, but it seems like they’re still, they’re so independent of each other. Plus their boy-girl twin. Um, do people even know that you have twins? Do they just assume you have a couple of kids?

Yeah. Most people don’t believe that they’re twins. Um, That’s a great question by you. My son is, my daughter, partially because of her medical condition, is really, really small. She’s a little bit shorter. She’s very slight by comparison. My son is not. He’s a bruiser. And so, I think one of the most interesting things is when people hear their twins, people are in disbelief. They can’t believe they’re twins. They don’t look alike.

But the other thing that I’ve always found interesting is that people will consistently say that my son looks just like me. They’ve said that since he was born. And of course, most people, they have no idea that the twins are adopted. And they say my daughter looks just like my wife. And unbeknownst to those people who are saying that, it is pretty special when you hear that. And I have heard from other adoptive parents that kids, they’ve adopted children that look like them and act like them over time. But Cooper really from the hair to the eyes all the way down, I mean, if most people believe there’s no way he was adopted. And again, there’s no way that those two are twins. People, they could not be more opposite most of the time.

Well, that’s fun that they look like each of you and your partner there. I know that. I’ve heard like spouses kind of grow to look alike over the years, right? So it’s kind of fun that you have, have your adopted children that have grown to look like you and your wife. So that’s, that’s pretty cool.

Chris, we really appreciate you sharing your twin journey with us today.

If listeners want to reach out and connect with you, what’s the best way to do that? It’d be open to anybody emailing me and helping with any questions, especially as it relates to this world of autism and, um, but anything related to the twins too. So my, my email address is Chris C H R I S M as in Mary. And then my last name, which is decent, D-E-C-E-N-T, @gmail.com. And yeah, we’ve had to learn so much about navigating funding for services in the state of Florida.

I’ve had some great employers and jobs in the last six years, but insurance is not enough in and of itself. And so, you know, understanding how your state treats these services, and I’ll use Florida where we live as an example. That’s one of the reasons why we’re leaving the state of Florida because Florida is a tough state to live in for autism-related services. As an example, both of my children should qualify for the Medicaid waiver in the state of Florida. The current wait list is 15 years. So once you get qualified, it’s 15 years. If you were to move to New York, for example, you’d be eligible tomorrow. The impact of that is thousands of dollars worth of services and therapies that we’ve been blessed enough to figure out for our kids on our own, some of which we’ve had to go into debt for. Up to this point, we’ve been able to figure it out, but ultimately, Florida is a tough state to live in to navigate those services. And so if anybody ever needs a hand, I’m happy to help with at least our experiences.

Thank you. Thank you for being open and sharing that. I know those, those are the parents, the benefit from the stuff they’ve heard today on the podcast and from reaching out to you for those details.

So Chris, thank you so much for joining us. We appreciate it.

Thanks for your time, Joe.

I hope you enjoyed that chat with Chris about his adventures as a father of twins, a lot of the challenges that they’ve overcome, the progress that they’re making with their twins. And if you want to connect with Chris, like we mentioned, I’ll link up to that in the show notes for the podcast. You can go straight to the podcast episodes at TwinDadPodcast.com.

Once again, today’s show is brought to you by TwinTshirtCompany.com, where you’ll find great t-shirts and designs for you fathers or twins. You can buy them for yourself or you can ask for gifts for your birthday or holidays coming up or Father’s Day, whatever it is, you can find something that’ll make you smile over at TwinTshirtCompany.com.

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