Not An Island Podcast
Not An Island Podcast
Ep 9. The Struggles and Joys of Autism Parenting
When we first realized that our beloved Ezra was navigating the world uniquely as an autistic child, our hearts were flooded with a mix of concern, confusion, and a fierce desire to connect. Embrace this raw and genuine account of our family's journey, as we recount the trials, triumphs, and treasures discovered while raising Ezra. From battling misconceptions to celebrating his individuality, we open our lives to you, offering a beacon of hope and a shared understanding for those on similar paths.
Join us as we shed light on the often-unspoken emotional landscape of parenting a child with autism, and reveal how our son's life has not only transformed our family dynamics but has also endowed us with an expanded capacity for patience, empathy, and resilience. Through laughter and tears, we'll share how these experiences have shaped our view of the world, our relationships, and our very sense of being.
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Hey everybody. We are super excited to have you join in with us on today's episode. If you're listening to my voice right now, odds are you are just as passionate about autism than we are, which is why we need your help. So, really quick, pass this episode on to everyone. You know, the share button is on the screen and the best part is that you don't have to even pause this episode to share it. So please help us achieve our mission to encourage every autism family that we can Head over to Apple and Spotify. Leave us a review like comment, subscribe to our channel on YouTube. It really helps people discover our podcast. And, without further ado, let's get into today's episode. Hello and welcome to Not it On Podcast, the podcast series where we talk about faith, family and autism and where those three things meet. We are your hosts. I'm Todd.
Speaker 2:I'm Amanda.
Speaker 1:We're the Johnsons and we're here again. With what is it? Our eighth episode now.
Speaker 2:I don't know.
Speaker 1:I can't keep count.
Speaker 2:That's a good thing, I guess.
Speaker 1:Yeah, we're episode eight. We are far into this thing, but no, we have an exciting episode for you. Today we actually have someone who has given us a topic idea for one of the podcasts.
Speaker 2:Thank you very much, yeah.
Speaker 1:And so we wanted to go ahead and talk about it. So, without further ado, we're going to get into this cutie lovely LLC on Instagram. Shout out, I think that's correct. Cutie lovely LLC. I want to say thank you and shout out to you for giving this topic idea for our podcast, and the podcast topic was this question. Well, kind of two questions what is the hardest thing you struggled with raising your autistic child and what is the best part of it? Okay, so are you only going to take turns?
Speaker 2:Yeah.
Speaker 1:I guess I can go first. Tyler, do you want to go first?
Speaker 2:Yeah, I mean, it doesn't matter.
Speaker 1:I'll go first. I'll go first and we'll talk about. We'll talk about the hardest thing we struggled with, and then we'll go back and forth and talk about the best thing Cool, All right. So here we go For me, the hardest thing I struggled with when it came to Ezra raising him. Hmm Well, there's a few things I'm going to cheat. I'm going to say two things.
Speaker 2:I know Like I definitely already had this in my mind that there's definitely not just one thing yeah.
Speaker 1:Two things for me. We'll just say two, two things that were the hardest for me. First was in his more developmental years, very, very early on, trying to connect with him, trying to understand him, trying to be his dad when I didn't understand autism yet. Yeah, and I'm always learning, but that was so hard because it was heartbreaking every day. I shared in another episode that for years I was waiting to hear him say daddy, I love you. And when he finally did, he was four years old. When he finally did, I broke down. He may not have even understood what it meant at the time, he might have just been repeating me, but when he said it, I took it and I ran.
Speaker 2:So I think we're just so hardwired to receive connection the way that we connect. We know the way that we want to receive that from someone in the same way we would give it.
Speaker 1:And that's just not necessarily the case with autism, specifically with autism because of those social differences.
Speaker 2:And you definitely weren't the only one. It was such a struggle to watch our family and friends struggle to connect.
Speaker 1:So with that, I would say that entailed something that I learned and that was grief and we'll do an episode on that learning about Really that you're going through a process of grief. But yeah, that that was hard. That would be the one of the hardest things. The second hardest thing I'm not gonna lie to you is Other people has nothing to do with him has nothing to do with Ezra.
Speaker 1:It has everything to do with Trying to shape the world around him actively, literally everywhere we go and Everyone we're around if they're new to him or maybe they're a stranger Trying to explain kind of Ezra's world, you know, and it's hard to do that in a supermarket.
Speaker 1:Feeling to apologize and yeah, oh yeah, oh man, yeah, I learned very quickly a good friend of mine who's an who's an adult who has autism. He cornered me in love and like, dude, don't ever apologize for your son, don't ever apologize for you and at the time I was like oh man, really.
Speaker 2:No, when they're doing things that are socially unacceptable or aren't being understood. It's, I mean, it's like it's nature, and you want almost to defend them by apologizing, like you? Yeah, well, I think yeah it's.
Speaker 1:It's a polite way out. I think, trying to be polite, I'm sorry, you know it's. It's almost like saying excuse me in our in in our language. However, I I learned through a lot of thought that you know, the last thing I want is for my child to grow up thinking that I'm having to apologize for him as in that I am ashamed of him. That's the last thing I want. And that's totally not what you want me to say no, it's not how I feel at all, but that's how it comes across.
Speaker 2:An adult who is autistic. He was also saying that to you because he knows what it's like to be on the other end of that Absolutely. I'm sorry and maybe what that feels like you know, yeah or misunderstanding that.
Speaker 1:So I've been very actively catching myself more now and through the past few years. You know what don't apologize. Don't apologize for him, maybe explain the situation if need be, but don't apologize for him because, he is who he is, and he is fearfully and wonderfully made. The fact that the God of the universe would be afraid of anything, but the Bible says that he was fearfully and wonderfully made, that we all are.
Speaker 1:So the God of heaven, the God of the earth, was very, very afraid when he made this child. Not afraid in the terms of scared, but afraid in the terms of this is a delicate delicate thing. And so he's made the way he is, and that was probably one of the hardest hurdles. And I'm still learning to give people grace. Yes, but that's probably one of the hardest hurdles, I would say.
Speaker 2:No, I 100% agree.
Speaker 1:That'd be my two things. I cheated sorry. Sorry, cutie. Lovely LLC. Sorry about that.
Speaker 2:I think, if I reflect on the hardest moments of raising Ezra, it wouldn't have near as much to do with him as it would to just to do with my own deficiencies. Yeah, you know being short tempered at times, or, you know, knee jerk reactions, those are the things that stick out of my mind that I just, you know they try to bring about like guilt or shame in you and you have to realize that you're just a human too and that your tank is empty. But those moments, there's just moments, where things get hard and you know he's irritable or he's melting down, and it's the worst time Like it's always when you're in the time crunch and you're trying to get somewhere, and it's just moments where I don't know those are some of the hardest times with Ezra is just moments where I feel like I just Inadequate. Yeah, like I started to have a meltdown too. You know, like, and I'm just like, get yourself together. You're a full grown adult, didn't? You do not have autism. Like let's, let's.
Speaker 1:Well, it's questionable if either one of us do or not. We always throw it at each other. Yeah, we always joke. We joke around, but yeah.
Speaker 2:I don't know what autistic family does, and I mean when you've done as much research as any parent or the child you're like hmm, I have some of those traits.
Speaker 2:I would say those are definitely the hardest times and I totally agree with Todd. As far as other people misunderstanding, I think it doesn't bother me quite as bad if it's a stranger, but I think I've had a much harder times, much harder moments where I've felt like the people closest to us who should do the work to understand when they don't, or when I felt like my child's been. I don't know if the right word is judged Miscategorized maybe. Yeah, yeah.
Speaker 1:Maybe just misunderstood. Yeah, just misunderstood.
Speaker 2:But yeah, all the things Todd said about connecting, I think that was really. Those moments are really heartbreaking to see. You know, even grandparents and aunts and uncles you know they want that reciprocation.
Speaker 1:They want. They want to see it the way that it's always done.
Speaker 2:Yeah, grandma, grandpa, you know, they want which he does that now.
Speaker 1:He does that now.
Speaker 2:Oh, no, man, he gives that to him now, but for so long, like he just wasn't able to do that, and that's the thing that kind of makes their heart come alive to know, oh, he cares.
Speaker 1:But you know, there were years, literally, where they'd come into a room and he's like doing his own thing and he's not even looking up at them you know, that's such a common thing with autism, and I would say the most beautiful thing, though, is that the grandparents and the aunts and the uncles and great-grandparents have stuck in there and they've learned.
Speaker 2:Yeah.
Speaker 1:And they've learned how to love him in a way that is sacrificial.
Speaker 2:Yes, yes, they had to go around the mountain. You know kind of thing, and I can remember times of Todd and I we had to learn just to get in the floor and get his eyes and I watched, you know, my mom and so many people in our lives just get on the floor with him and get his eyes. You know fight for his attention or affection and I really am grateful that people stuck in there. And you know, because it's like I said, it's not an easy thing when you're not getting that reciprocation the way that you know it normally would be.
Speaker 2:But, I don't know. I think we cheated. I don't know if there's like an exact hardest time. I don't know.
Speaker 1:I could name a few, but yeah, I know I would say in general those would be probably the hardest things.
Speaker 2:I can think of. One other thing would be just some of his more severe health complications and those times. I feel like tested everything we had in us and really.
Speaker 1:I mean tested our marriage like they're a moment to test our marriage oh with no slow.
Speaker 2:Those are some of the. You know what I'm talking about no sleep no sleep, no sleep, and you're just beside yourself and you're not doing a good job like navigating the world, let alone communicating with one another or, you know, doing anything that you should be doing. And those are very real raw moments and if you are going through them now, or if you've been through them, you are not alone.
Speaker 2:I mean, there's things that come out of you on lack of sleep that you would have no idea you were capable of saying, doing. We've had some real yuck moments.
Speaker 1:That's where you just gotta give each other some grace, and be okay with it.
Speaker 2:So you know what.
Speaker 1:I didn't mean that.
Speaker 2:Right, Okay, you know I love you.
Speaker 1:So we're gonna talk about what is the best part of it. I might cheat again, I don't know, there's quite a few there too. The best part of raising a child on the spectrum. First and foremost. The first thing and this is gonna sound super general and maybe a little cliche, but I could not be more serious when I say that raising a child on the spectrum has taught me everything about being a child of God. Being a father has taught me everything about being a son. I say that all the time, but it's true, because the way that I look at my son, there's literally nothing he could do wrong Nothing, especially since he has autism. Like there's nothing he could do wrong. And is he perfect? No, no, he's not perfect. But at the same breath, I view him in such a way that I love him. I'll put it this way there's nothing that he could do that would ever change the way that I view him, or the way that I love him, or the way that I care about him, and that's just a parent's love, right? But then-.
Speaker 2:I think your understanding of the depth of the love of God is so shallow before you know-.
Speaker 1:Before you see it yourself.
Speaker 2:I know, for us it was. It was like, wow, this is skin deep. But then you get in ankle deep and you realize the love you have for this child and you realize like-.
Speaker 1:Wow, wait a second, I'm a child. Oh wait, hold up and you start to realize some things. But I say it this way that, like the Lord is teaching me, he's teaching me his love by growing mine, he's teaching me his patience by growing mine, he's teaching me his grace by growing mine, and that I truly believe that wouldn't happen without hardship.
Speaker 2:Right.
Speaker 1:You know, philippians 3-10 says that we rejoice in the power of his resurrection. Talking about Jesus, right, we rejoice in the power of his resurrection and the fellowship of his sufferings to be conformed to his death. In America we try so hard just to like bypass the suffering. But the suffering in your life is where the gold comes from. So, like walking through the trenches with my son through the hardest moments of so far, his life, has taught me more about life. Yes than 27 years before I had him.
Speaker 2:Right.
Speaker 2:You know, so I'm all 100% all the things that we went through just a minute ago of being the hardest moments. It's those moments have shaped us and made us into who we are right now, and they're a part of Ezra's story and they will have shaped him and made him into who he is destined to be, and he would never be able to be who he's destined to be without the hardship that he's faced. He would never be able to love the way that God has created him to love without those hardest moments. And I think, just recognizing that, that there's gonna be one day. I believe he's gonna walk in so much victory, even with this diagnosis, that he's gonna encourage and inspire so many people he already encourages and inspires us on the daily.
Speaker 1:He inspires a lot of people. Yeah, that would be my first thing generalized cliche, but also super deep. Number two I would say the best part about raising a child on the spectrum is he gets to stay a kid.
Speaker 2:Yeah, how are you gonna come steal mine? You didn't know.
Speaker 1:I didn't know, but I stole it anyway and I cheated, I'm cheating and I'm stealing, and I'm making my way to the top. No, yeah, he gets to stay a kid. I don't know how to put this, but he's seven, but developmentally he's a little behind that. And is that something bad? No, because I get to have a child who's innocent. I get to have a seven year old who doesn't understand the nasty things that our society teaches seven year olds.
Speaker 2:Right.
Speaker 1:I don't, you know, is he sheltered? And probably a little bit, but no, like it's. It's not about him being sheltered, it's really like he doesn't understand things like that. And if he does, he doesn't show it. I think it just passes right by him and to me that's so beautiful because I get to have a child, especially through all the hardships he talks about. I get to have a kid who's a kid, not a kid who's talking back, and well, not a kid who's-.
Speaker 2:Not in the same way. Not in the same way, you know like he's innocent.
Speaker 1:I don't know how to put that. No, that's the second thing.
Speaker 2:That definitely was my number one prayer. I can remember the entire time I was carrying Ezra in my womb my prayer was Lord, just let him be innocent, let him be a child. There's so much pressure in our society and in our world today to look a certain way, dress a certain way, like a certain thing, be a certain way. And he doesn't feel any of those pressures. He doesn't. He does not care what anybody else thinks, he doesn't care what anybody else likes, he likes what he likes.
Speaker 1:He wears these red shoes. He calls them Spider-Man shoes, he loves the color red and they are borderline on, maybe, gang territory.
Speaker 2:You don't think so, todd, you're silly. They're like so red, yeah, but he would never know what the coolest shoe is or what the like he does, Because to him those are his cool shoes. Yeah, he doesn't feel those pressures from other kids or adults and I pray that that, as much as I long and pine for understanding and that he would be able to communicate more fluidly, I never want him to lose that, because I genuinely think it makes him authentically who he is.
Speaker 1:Regardless.
Speaker 2:Yeah, he really could teach a lot of us a lesson in that, because he genuinely just doesn't have a care in the world and I pray that it stays that way. I think even if someone would try to bully him or something is at this point in time he really wouldn't, he wouldn't know, he wouldn't take it out.
Speaker 1:As that. No, he would think they're playing.
Speaker 2:No, and it's almost like a shoe. It could be dangerous. He's seven years old.
Speaker 1:He's growing up, it is almost like a shield around his heart. It's an innocence.
Speaker 2:Yeah, a purity and an innocence for sure. Yeah.
Speaker 1:That's number one.
Speaker 2:Yeah, I really say that's number one and I just to see he has such childlike faith. He really really does. It's just things that we haven't even like, I wouldn't say like we've even taught him. He's just, he just has the sense of awe and wonder and adventure. That's one of my most favorite things about Ezra he's always down for an adventure.
Speaker 1:He loves that's my dude right there. He loves to go and see.
Speaker 2:And then we like one of the things and I don't know if any of your children do this, but he likes to kind of rehash everything we've done and he'll talk about certain experiences for years. I mean it could. We went there once and he's remembered so many details about it.
Speaker 1:Yeah, we made the biggest mistake traveling to the beach, because now we have to do it every year. We don't have a choice. We don't have a choice.
Speaker 2:That's not cheap, but he's memorized places that are there. I mean, I know that we're probably getting into like a whole nother thing, but like he has the craziest photographic memory and it does blow my mind, but the joy that even the simple things in life bring Ezra. That's probably one of my most favorite things.
Speaker 1:He's a joyful kid.
Speaker 2:Oh, yeah, yeah for sure, yep. Yeah.
Speaker 1:Yeah, those are your two favorite things.
Speaker 2:Yeah, I think, and I think just watching him overcome.
Speaker 2:I know that that's like not one moment in time, but it's been through his whole life but watching him overcome, watching him defy odds, watching him do things the doctor said that he may never do, watching him just grow and learn. And wow, he blows our minds, and he blows other people's minds too, and I pray that that's another thing I pray. It's like he continues to blow our minds with all the things that he's capable of, that we're just like think that he can't do something or think that he doesn't get something, and then boom, like here he goes, proving us wrong. Yeah, no doubt that's amazing. That's who he is.
Speaker 1:So it's a little short of an episode, but we do want to say thank you to QD Lovely.
Speaker 2:LLC. Yeah, this was awesome.
Speaker 1:I really hope I'm saying that right, but we want to say thank you for this. It's been awesome to be able to talk about it and listen. If you guys are on YouTube watching this, or if you are on Spotify or Apple Podcasts anywhere you're listening to this, do us a favor. We're trying to get the message out there of hope and encouragement for families on the spectrum and we really need your help.
Speaker 1:So what we need you to do is follow, share, comment, subscribe, put links up, review. If you're on Apple Podcasts or Spotify, leave a review. Just let people know what you think about the podcast, Maybe the episode it really helps because it helps the algorithm and helps us kind of grow as a channel.
Speaker 2:Yeah, and if one of you guys listening right now have more ideas, throw a matter.
Speaker 1:We are all ears.
Speaker 2:I know something you want to hear about. I know we have plans to kind of have a string of people lined up to begin to interview other people, because we are a small part of the tribe that makes this whole thing happen.
Speaker 2:God has blessed us with so many incredible therapists and people and friends in our life that I'm like they need to come on and share, because we wouldn't be able to like function without all of what God's blessed us, with, all the people that God's blessed us with to help raise and just grow as we're up.
Speaker 1:So if people have a question they can go to, or if they have an idea maybe a podcast topic idea they can just shoot us an email at notanislandpodcastgmailcom or find us on Instagram notanislandpodcast. Yeah, there's just places to find us, Just leave a comment down below anything We'd love to hear from you guys. So, without further ado, I guess I can pray us out, or you want to.
Speaker 2:Yeah, you pray us out.
Speaker 1:Let's go, or we just thank you for today, and we thank you for highs and lows. God, we thank you that you use every moment just to give us a clear understanding of who you are and that you have entrusted us with a child who is fearfully and wonderfully made, who is made in such a way that maybe the society is catching up to. But, lord, we just we thank you for the greatness that is there and we thank you for all the families out there with children on the spectrum, that the greatness inside these children may be revealed. Yes, father, we just ask for you to shower these families with grace and with patience and with love, god with faith and hope and encouragement, Lord, just to see you rightly and to see the path.
Speaker 1:Just thank you for this podcast. We thank you for the opportunity to speak to people and just to share encouragement and hope and we thank you, thank you, thank you. It's in Jesus precious name, amen. Amen. Well, I'm Todd.
Speaker 2:I'm Amanda.
Speaker 1:We're the Johnson's and this is not an Ellen podcast. Until next time, we out, we out, bye. Do you believe in the Jesus Family?
