Dads with Autistic Kids
Aliw: Hey, it’s Aliw. Since April is Autism Awareness Month, we’re bringing back this episode, Dads with Autistic Kids. This conversation was an eye-opener for me, and for so many of you as well. It’s a very personal conversation between two dads on what it’s like to raise kids on the autism spectrum. You know, it’s not everyday that we get to hear two men open up and be vulnerable about fatherhood and family life. So I’m grateful for Mike and Jay for letting us in, for having this conversation, and we hope this helps other parents with autistic kids, feel less alone.
Jay: Good morning.
Mike: Good morning. Can you hear me?
Jay: Can you hear my audio?
Aliw: From INC Media Audio, this is Making Changes, a podcast about the changes we go through and the life lessons we learn along the way, but always with God by our side. I’m your host, Aliw Garcia Pablo.
Mike: Hi, Jay. How are you?
Jay: Hi, Mike. I’m good. How are you?
Aliw: Today’s episode is for dads. Today we’ll listen to two dads who have found themselves adjusting their plans in parenting upon finding out that their children were diagnosed with autism. You’ll meet Jay from Australia whose 4 year old daughter, Layna, was recently diagnosed with autism, and he’ll be talking to Mike, who will be passing on what he’s learned from his experiences with his 8 year old son, Mateo, who was diagnosed at 22 months.
Mike: What time is it over there right now?
Jay: 12. Just after midnight. 12:18.
Mike: You look so awake.
Jay: Helayna is very active at this time of night. We usually don’t sleep until 4AM. That’s a good day. Yesterday it was 5AM.
Mike: I hear you, bro. I hear you.
Aliw: So, what happens when a dad realizes he now has to pivot his parenting styles and strategies when his child has such an active mind that they rarely sleep, or are non-verbal and have to navigate through a whole different way of communicating and interacting? How does one cope with an unexpected diagnosis that changes their lives in an instant? Here’s Mike and Jay. Let’s listen in.
Jay: Hi, Mike.
Mike: Hey, Jay.
Jay: Thank you so much for taking this time to sit down with me, and basically, answer a few questions that I’ve had since, you know, my having a daughter that has been diagnosed with autism, and you having I believe a son, Mateo. I would really love to hear, like, your insights to my questions, being further down in this journey than I am. So thank you so much for taking this opportunity with me.
Mike: No, thank you, Jay. It’s great to meet you. And I say thank you because it’s important for us to share our stories. When we share our stories, we help one another. Thank you. Thank you so much. This is great.
Jay: I wanted to ask – how did it start for you?
Mike: For Mateo, he was formally diagnosed shortly before he turned…shortly before he turned two, when my wife, Myra, had started to notice some things about our son when it comes to what we would normally see as milestones for children his age for toddlers. And I just remember coming home from Church. And, you know, I can see that something was troubling her. And then she just simply said, “I think Mateo is autistic. I knew nothing about autism to begin with…
Aliw: And that was the start of their journey. From that moment of a mother’s instinct, they began to see medical professionals and months later, by the summer of 2015, their beautiful boy, Mateo was officially diagnosed as autistic.
Jay: So how was that emotionally? For the both of you?
Mike: It was the weight of reality settling in. It had been this up and down journey of like, does he really have autism? Are we just overthinking this? Is he just missing some markers, some milestones? And it’s our fault, because we haven’t done enough with him? I don’t know. Right? So when we finally received that official diagnosis, I remember when we were just walking back from the doctor’s office to the vehicle. I don’t remember us actually talking on the way back to the vehicle. And it’s just when we all got inside the car, and Myra and I, we just looked at each other. And both of us were just so teary eyed. It was that moment of acceptance that this is our son. And he comes from God.
At that very moment, we had a prayer, thanking God and helping us really begin to understand not only our son, and what his journey could entail, but thanking God to help us understand the kind of journey that we need to take as a family.
Jay: We have our daughter Layna. Currently four years old. And she was two years old also when she was diagnosed, when we had our, you know, the regular checkups that she had just to make sure she was hitting her milestones, that’s when the nurse noticed some signs that led to autism.
I think that was the biggest struggle for us, that we didn’t have a definite answer because of the pandemic causing a lot of delays. We had to see three different professionals just to make sure that the diagnosis was correct. And when she was officially diagnosed, it was already like a breath of relief for us. But when we first found out that she might potentially be on the spectrum for autism, it was, I would say, very heartbreaking for both Gem and I.
It’s really different, when it actually impacts your family directly. And Layna is our first child. We had all these dreams that we were thinking about. And then when we already had an idea of what challenges somebody with autism could have. And when we find out that our daughter will be facing those challenges, you know, it crushed us a little bit. That’s putting it gently. It crushed, crushed us a lot.
I guess the question I want to ask is, what would you say to another dad, in particular another father that has just been told that their child is on the autism spectrum?
Mike: I would have to ask, what in particular with your situation, your dreams for your child? What in particular was heartbreaking for you, and for your wife, when you found out?
Jay: We had dreams of, I guess…I guess the conversations that we would have, and the, you know, the adventures that we would have with her, as she grew up older, and, you know, for my wife, it was also things such as for her, eventually, going, walking down the aisle and being a grandma, for my wife and us being grandparents.
The first month, it was really a lot of prayers. And really, it was, through those prayers, that we were able to find the courage to face what we needed to face, to do what needed to be done.
Mike: From your original question, somebody who just finds out that their child is on the spectrum, and then they might be feeling lost? You know, I would let them know that—I would argue that you’re actually not lost. But once we get that official diagnosis, well, now we know.
Jay: That’s right. It was really God who stepped in and helped us change our mindset.
Mike: And this is actually something I had to remind my mother, not too long ago. And you know, my mother, she loves her grandson to death. And she keeps sharing with us how she’s always praying for her grandson. And what’s interesting is that she, in her prayers, would say that. To help Mateo become normal. Right? And I had to remind my mother. You know what, Mateo… this is his normal…
But I think instead of feeling lost, at least now you know, the direction you needed to take. Right? And it’s not easy. It’s never going to be easy. And it’s too simple to say you have to accept it. This is who they are.
Aliw: You know, I can’t say that I know exactly what Mike or Jay have had to go through, but as a parent, I can definitely understand that fear that sets in when you receive life-altering news about your child, fear of what’s to come and the never-ending questions that keep you up at night.
Jay: So, we have those questions such as “Will my child ever be able to speak?” And “Will they be able to look after themselves?” “Will they be able to find love?” Because as parents, and even before we even found out any of this diagnosis for her, our concern was always like, make sure that she’s prepared and she’s ready to face life by herself.
Mike: You know, in my case, it’s like I had that thought, “Is my name going to be carried to the next generation?” Right? Because he’s my only son, like how, like, how selfish and how archaic is that thought, right?
Jay: It’s like, how are they going to be when we pass away? Will they be able to understand the things that they need to do, and especially as members of the Church Of Christ, will they be able to comprehend what they need to comprehend so that they can remain inside the Church?
The question I have for you, Mike, is what do you tell yourself so that you can find the courage to continue doing what you need to do, and just to and carry on?
Mike: Simply, we have to get him to salvation. We can dream and we can wish, we can pray for our children to gain a certain understanding and skills that will help them in life. But everything that we will be dreaming of, everything that we would be praying for, all of those are necessary for our child, in the end, to get to salvation.
So, that is the one thing that just being a Christian dad, you can research parenting books, you can look up on websites on how to be a great father and all that, but we keep hearing it in the worship service all the time, we keep hearing it from ministers, God already gave us the blueprint in the Bible. Right?
I remember Emirick Haro, she mentioned this in a Faith Speaks that she did a long time ago, she was talking about her son. And I just remember her mentioning that she came to the realization that her son doesn’t really belong to her, or her husband. Her son Russell actually belongs to God. Right? And Mateo, our son – he came from God. So, we have to get him to salvation. What is it that we can do to help him so that he can grow to love God?
Interestingly enough, we started this prayer a long time ago. It was on the heels of a video streaming worship service. And, if I remember correctly, it was an ordination of new ministers. And I remember holding Mateo in my arms that day in the prayer for those newly ordained ministers. It hit me. Why can’t Mateo be a minister? From that point on, that has been our prayer for Mateo.
Aliw: Jay, being a son of a minister himself, was quite surprised at the dreams and aspirations and prayers Mike had for his son, Mateo.
Mike: Sure, we want God to help him to do the things that we do, so that he himself can actually grow up to take care of himself. But if the goal is to get him to salvation, praying for him to become a minister? What does that require? Well, he needs to learn how to speak. He needs to learn how to socialize with people, he needs to understand other people, and therefore to be able to understand their problems, he has to ultimately comprehend the words of our Almighty God, right?
Jay: Right. Yes.
Mike: And ultimately, he has to grow to love God. That’s going to get him to salvation. Right. So that has been our prayer for our son.
Jay: It’s really just follow the path, follow the blueprint.
I think fear plays a big role in needing to do the things that we need to do. Sometimes, I guess we second guess ourselves. It’s like, are we doing the right thing? Is this really helping Layna?
Jay: And that’s kind of why we have a lot of late nights is that the majority of the time her energy is really high. She is always so happy. Right? And it’s very hard to calm her down. But when she’s down, when she’s sad, oh, you’ll know it from a mile away.
Jay: And it’s hard, she can’t tell you why she’s not feeling happy. And you have to, you know, we’ve learned a lot by looking at her nonverbal cues, being able to learn a lot more of that. It’s still a guessing game for us.
Mike: We’ve been seeing it in Mateo, how we need to communicate with him to be an active listener. Being able to read his body language, so that we can address what might be bothering him.
Aliw: And it was in this part of the conversation where what started off as thoughts of fears of the unknown, now slowly transitioned to the blessings that they’ve begun to see in their marriages as a result of learning and dealing with the autism diagnosis.
Mike: Over the years we’ve discovered how we need to be better for each other as husband and wife. It could be a challenge for husbands in general, but to read body language, and then to be an active listener. I know it’s our first impulse to try to find a solution, and just fix it. Right? Because we’re fixers, that’s what we do, we fix things. But a lot of the time, we don’t need to be the fixer, we just need to be the listener, we just need to try to understand what’s happening. So in being able to do what we need to do to help us strengthen our relationship with Mateo, in turn, it’s helped us with Micah, our daughter, and in turn, it has also helped Myra and I as husband and wife.
Jay: Over these two years, our relationship has gotten stronger, because not only has our communication skills have become better, it’s, you know, seeing the cues, our patience has gotten better. And overall, just being able to show that love, you know, and having that energy through how you say your words. You know, when we have those bad days, we want to make sure that we’re also in that place of love before we say anything.
Parents who have children who are neurotypical, you know, someone that doesn’t have autism, their child is able to say what they want to say when they want something, or what might hurt or whatever. Whereas with autism, they can get easily overwhelmed with a new environment.
For example, when we bring her to the children’s worship service, right, and there’s, you know, it’s quite loud, there, there’s a lot of children and sometimes before, while you’re waiting for the worship service to start, and even after, the children are quite loud and happy, in general, but for her, that is hard for her to get used to at the moment. And that’s one of many, but one of the triggers that can start off a bad day, because she’s not able to express it.
But would you and your wife together, when you have those bad days, when you aren’t able to console them, eventually becomes overwhelming for you, slowly, when you realize that, how do you and your wife work together to get through it?
Mike: Essentially, we talk it out, we have to talk it out. So, if ever Mateo is having difficulty regulating his emotions, like negative emotions as if he’s not feeling good at all, we can ask him questions. If he reacts to it, then, hey, maybe that’s what actually bothered him. And then we can smooth things out. If he doesn’t react to it, then we’ve got to keep asking him.
And you’re probably finding this with Layna as well. What could be bothering them at that moment actually probably didn’t happen at that moment. It may have been something that happened a few hours ago, it may have been something that happened maybe a couple of days ago, or maybe even last week. But it’s only at that moment that they are expressing their feeling of what happened to them. It’s so important to make them feel safe, that they can share.
Aliw: You know, just listening to Mike and Jay, I could sense that they wake up each day not knowing what to expect, especially since they rarely get much sleep due to their children’s energy. But whatever day they’re having, good or bad, they’re constantly and patiently working to get to the root of the triggers their children have.
Jay: And it’s like, it’s just a lot of this trying to be a detective, trying to figure out what it is.
Jay: So, do you guys do anything differently whenever you have the good days with Mateo? How do you celebrate those good days with him?
Mike: Every day, they’re little celebrations throughout each and every day. Celebration is even in the form of he just wants us to get off our phone, or get off our screen, and just sit with him. Because he just wants to feel that connection. He doesn’t need to say the words “Hey, Mom, Dad, you’re on your screen too long. Pay attention to me.” He blocks our view of our screen. So it forces us to put our phone down or whatever. And then he sits on our lap. And then he’s face-to-face with me, giggling and laughing. And it’s like, “It’s my time now.”
There are times where Myra and I, we’ll have a very animated discussion. You know what he’ll do? He’ll come between us. He literally will grab our hands and make us hold our hands.
Jay: Oh, wow.
Mike: And then he’ll make us face each other. And then he’ll make us face him. And then he’ll start giggling.
Jay: Layna actually did something, not quite like that. This was one of those very early mornings, where she’s very happy. It’s 3am, (she) doesn’t want to go to sleep. Gem was watching something. And Layna went up to her, looked at her phone, and Gem thought, “Oh, maybe she’s interested as well at what I’m watching.” She leaned over, pressed the pause button, (and) put the phone away.
Jay: It’s like, I guess in a way, she’s telling mommy to “pay attention to me,” right?
When she does things like that. And then she looks at you with her big round eyes. It’s like, she doesn’t have to say it, you just know it. We celebrate when we get those moments with her.
What are some, you know, difficult truths that you’ve faced over the past six years of having to tell other people, explaining to them your child’s diagnosis? And did you have to do anything particular to overcome those?
Mike: One difficult truth is that, even though Mateo can’t use words, he will express himself vocally and he can do so loudly. Right? Very loud.
Jay: I can relate to that.
Mike: Even though there might have been these weird or uncomfortable glares or stares coming from others, it’s still important for us as a family to make Mateo feel like, “You know, maybe you’re a little bit loud. But don’t worry about what other people may be feeling at this time. Because we want you to feel comfortable wherever you’re going to be, wherever you go.” So it’s not so much talking to other people and trying to get them to understand Mateo.
Jay: That’s what we eventually figured out – that it’s really her being happy. It’s the way that she expresses her happiness. So we shouldn’t be ashamed of that.
Mike: Wherever he is, if he’s at home, if he’s at Church, if we’re out and about, he knows that we’re not going to change our tone or the way that we speak to him. So that will lend to that feeling of safety for him. That, “Yeah, we’re going to talk to you the same way that we talk to you at home, dude.”
Jay: Thanks, Mike.
Mike: No, thank you.
Jay: Thank you so much for answering the questions that I had. It really helped, gave more insights to it, and what to expect, and things that I was unsure of. Thank you for giving your explanation being further along in this journey. It really gives us that hope. It’s really been a great discussion. Thank you so much.
Mike: Thank you. This has been so awesome. And just being able to share stories, and just being able to verbalize just really just helps me like reflect at the same time. This is almost kind of therapeutic as well.
Jay: I was about to say. You’re actually the first dad that I’ve spoken to, at length, about, you know, autism having a child with autism. And it’s been, like you said, it’s been therapeutic. It’s been good.
Mike: Awesome. Oh, that’s, that’s so great.
Jay: Thank you again, Mike.
Aliw: Mike and Jay, I just want to thank you both. It was really heartwarming, actually, Jay, to hear you say, this is the first time I’ve spoken to another dad. And with everything that you guys talked about today, Jay, what would you say was your biggest takeaway?
Jay: My biggest takeaway would be how Mike highlighted, how when we have our prayers, and we pray to Almighty God. It’s really about our child, and changing and shifting our mindset, that we are still parents, they belong to God. And we’re just there to lead them to salvation.
Aliw: Yeah. And for you, Mike. Well, you’ve been on this journey for, you know, eight years now, Mateo’s eight. Have you ever talked, talked it out, talked it through with another dad the way you did today?
Mike: It’s the same thing with me. This is by far the most, aside from Myra, the most that I have talked about my son, and our family life. And it was truly therapeutic, to really just not only hear, but to feel those ideas that have been in my head, and in my heart for eight years. So, thank you.
Aliw: Why do you think it’s just as important for dads to get emotional support?
Mike: Silently suffering. Right? Part of that, because as a head of household, as a father, as a Christian dad, like, you’re expected to, to provide for your family, but that’s not just materially. You have to be there emotionally. And if you want to, if you’re somebody who’s always kept your emotions in check, you’re not going to be the leader you need to be. It’s important to talk freely in that way with your spouse. It’s important to be that active listener for your spouse, but especially for your children.
Aliw: So you’re both functioning with no sleep. I admire the fact that you are both and your wives are so much more in tune with your children, as opposed to parents who may have quote, unquote, normal kids. Those good days, where they’re not having a tantrum today, or those good days, while they actually, you know, slept for five hours instead of just two you both take these small moments, these micro blessings. And really, never taking them for granted and realizing, wow, this is God’s blessing for us today. If autism was not in your life, how different of a dad would you be?
Jay: Somebody once said to me that we’re blessed with special children because we’re special parents. But I like to say, or I think what we’ve started to see is that it’s our children that helped us to become special.
Mike: We’ve come to learn how to communicate with Mateo, how to try to understand him, how to help him. This is what we are supposed to do as parents anyways. And I mentioned this before, it’s also helped us in how we have been raising our daughter, as well.
Aliw: You both talked about how autism has helped your communication with your spouses, has helped you be more aware in using the right words, and you know, energy and empathy with your child, so how would you say your journey has also changed your relationship with God?
Mike: Our prayers have to shift. Even though God knows exactly what we’re thinking, but to take what’s so deep in your heart, and to just lay that out for God to receive? I think that’s another big change. Being a man, if you’re going to be emotionally accessible for your family, all the more you have to be that way to God. As a Christian dad, everything that I do, everything that I say, every mistake that I make, is going to impact my entire family. So what are you going to do? You can’t get them to salvation if you don’t keep working on your relationship with God. Because you’re accountable to Him for the sake of your family.
Jay: I don’t want to say that I wasn’t as trusting before. But I feel like I’m trusting even more to God’s plan. As long as we have our complete trust in our Almighty God, and we remain faithful, we have our prayers, and we continue our, you know, our devoted services to Him, He’s going to take care of us, He’s going to take care of Layna.
Mike: We continue to grow in our prayers. The thing is, though, we can’t stop serving Him. And you know, and over the last couple of years, and in part of the needs of our local congregation because of this pandemic is, you know, I just felt encouraged to do more to help out my local congregation as well. God’s given you so much, what can you do more for him as well?
Jay: That’s another thing I just realized also. You’d think that someone who’s just found out that their only child has been diagnosed with autism, and the challenges that’s presented in front of you, you’d think that oh, they won’t have time to take up any more duties. And for both Gem and myself, we’ve actually taken up extra duties in, not only in our local congregation, but also for our district.
Aliw: Thank you both. Thank you so much. My kids are older, but I’ve learned a lot from what you both have shared, and I think that there’s so many parents that can really learn a lot from this, whether or not they have children on the spectrum. So, thank you for sharing your story. Thank you for sharing your heart. And thank you for trusting, Making Changes to tell your story.
We’re glad to have been able to help you with your therapy and you will be getting the bill in your email. I’m just kidding. Thank you guys.
Jay: Thank you, Mike. Thank you, Aliw.
Mike: Thank you so much. Thank you.
Aliw: Hope you both get some sleep!
Aliw: Special thanks to Mike and Jay for taking the time to share their stories and life lessons with us. And if you found value in what you heard today, please share it with a friend or a dad who may be experiencing what Mike and Jay are going through. And we’d greatly appreciate it if you can leave a review on wherever platform you’re listening from. Be sure to subscribe to Making Changes to stay up to date with new episodes. For more inspiring content or to learn more about the Iglesia Ni Cristo Church Of Christ, log on to incmedia.org or download the INC Media app.
Thanks for listening. And may your change uplift you.