Not An Island Podcast
Not An Island Podcast
Ep 4. Our Autism Parenting Adventure (Pt. 1)
Ever wondered about the extraordinary ways faith can influence your life, especially when faced with daunting challenges such as raising a child with autism? Well, join me, Amanda, and my husband Todd, as we recount our unique journey - walking through fire and emerging stronger, fortified by unwavering trust in God's word. We share our battle from the moment God healed my body and promised us a son, Ezra, through his premature birth and the ensuing struggles, including his severe lactose intolerance and dairy protein allergy.
Brace yourself for a rollercoaster of emotion as we dive into Ezra’s autism diagnosis and the hurdles we faced in seeking early intervention. Discover how we learned to be proactive, advocating for Ezra while balancing the nuances of family dynamics amidst it all. Find out how our younger son, Justice, became an unexpected catalyst for Ezra’s growth, and how the pandemic surprisingly turned into a season of progress for our family. Our story is a testament to faith, resilience, and the ability to see beyond the present. If our journey touches your heart, we welcome you to share your story with us. Tune in, rate, review, subscribe, and follow us on this heartrending journey of parenting a child with autism.
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Hi and welcome to the Notting Island podcast.
Speaker 2:This is the podcast series where we talk about faith, family and autism and that little corner of the world where all of that meets. We are your hosts, todd and.
Speaker 1:Amanda.
Speaker 2:We're the Johnsons, and in today's episode, what do we have? Amanda? What are we talking about?
Speaker 1:So we just decided to wing one wingy, but I really thought it was vital and important to share Ezra's journey and kind of his story with everyone. We could start all the way back at birth, if you want to Way back.
Speaker 2:All right. So those of you who know us, no, but those of you who don't, I was active duty Military for seven years. We were stationed overseas my whole career, and over in the big island of Guam, Hafa if you're from Guam, what's up? Hafa, Guam? Yeah, we spent three years over there and you know, Amanda couldn't get pregnant. We were having a little bit of an issue for a few years.
Speaker 1:Fertility issues, hormone issues a lot.
Speaker 2:Amanda had a dream one day as I was out processing at the end of my enlistment.
Speaker 1:Amanda had a dream where yeah, the Lord gave me a dream and in that dream he told me that he was going to heal my body and that I was going to have a son named Ezra Daniel.
Speaker 1:And I woke up like what you know, because the doctors were saying the opposite of that, and I think the Lord had to really kind of take me on a journey that I had had way too much stake and bank in what the doctors had said, and so it just led me on a journey of faith to believe him for what he had promised me, and within a few months of just praying and believing, within a short period of time I was pregnant with Ezra.
Speaker 2:Yeah, and literally not exaggerating the day that I came home with orders in hand, which those of you who are military or know someone who's military is close to you, once you have your orders, it's like the point of no return. So the day I came home with orders in hand, I walk home and she's holding a positive when he says orders, he means orders.
Speaker 1:That said, we were separating from the military, separating Like it's like we were going home.
Speaker 2:You can't turn around. This is it. It's a big jump. No more healthcare from.
Speaker 1:Uncle, sam Uncle.
Speaker 2:Sam, you know all that no home to go, to all that. She was holding a positive pregnancy test and I just about fainted.
Speaker 1:Because we were okay with obeying God, just the two of us going home to nothing and starting over, yeah. But this was a kind of through a whole new aspect into it. But we knew what God had told us to do and he already knew. He had already told me about Ezra beforehand, so you know.
Speaker 2:And so Perfect, fast forward eight months. You had been having some issues with blood pressure, you had preeclampsia, pretty bad, it was spiking and dipping, and spiking and dipping.
Speaker 1:It was at the very end of my pregnancy. I honestly had a very other than the morning sickness, not a very healthy pregnancy. It was at the very end. I just started to have my blood pressure just go up out of nowhere.
Speaker 2:Yeah, and then here came Ezra, at eight months, eight months gestation, which means he was a month early. And you would not know it by the size and development that this child has now. He is an absolute unit. But when he was a newborn I remember I could literally hold him in my hand and his feet were hanging off my wrist and his head was barely.
Speaker 1:Both he and his brother were born at the exact same time, a month early, and they were both extremely healthy and big.
Speaker 2:Yeah, massive. So I'm glad they didn't make it nine months.
Speaker 1:I know.
Speaker 2:Wow.
Speaker 1:Been 10-pan babies.
Speaker 2:Regardless, ezra had a lot of difficulties, even at birth.
Speaker 1:So it was a traumatic delivery, an emergency delivery where they couldn't get the spinal in my back and so they knocked me out.
Speaker 2:And he was going into distress as well.
Speaker 1:He was going into distress, and so it was an emergency thing and I'll say right away, bringing Ezra home from the hospital. We didn't know what to expect. We were brand spanking new parents who never had a baby before. What are you going to?
Speaker 2:say One second. When she says, bring him home, we'll post a picture up right here. When she says home, she literally means a 10-foot by 8-foot home depot shed. That was about what, would you say 20 years old.
Speaker 1:Outside my parents' house. I don't know how old it was. We called the Love Shack.
Speaker 2:The Love Shack. They didn't like that, it's alright.
Speaker 1:They thought God would like you know everything would just be set up real quickly, but there was a process of faith. That's a whole other story.
Speaker 2:That's a whole other story.
Speaker 1:But he provided every single thing we needed every step of the way, and yeah, that's a whole story.
Speaker 2:Literally, when you would get out of our full-size bed between two full-grown adults, we would get out of this full-size bed and when you would sit your feet on the ground to put your boots on, to go to work my job that God blessed me with, my knees were literally touching Ezra's bassinet.
Speaker 1:Yeah, you know, he was born in a manger.
Speaker 2:Born in a manger. Yeah, that, pretty much it, but it was.
Speaker 1:No hay or animals.
Speaker 2:Yeah, that season was so beautiful, though it really was.
Speaker 1:It was such a precious time. It was also the most difficult, probably one of the most difficult times of my life. His babyhood, ezra, did not sleep, he did not sleep From the moment that we brought him home from the hospital. You know everybody says you're not going to sleep, but he woke up every 15 minutes and he just screamed and screamed, and screamed.
Speaker 2:We would take turns every 15 minutes.
Speaker 1:We'd bounce him and try everything we could to sue them. Turned out he had a severe. He was holding the milk down, which is not normal, with lactose intolerance and a dairy protein allergy, but he started to poo poo blood TMI. But then they realized okay, he's got both of these allergies and it was like the damage was done in his gut because we were having to feed him formula because I had been so ill that I wasn't producing enough to feed him and so, yeah, that was the beginning of his life. It was a very traumatic life.
Speaker 2:Eight months we had an emergency. We won't go into all that in this episode, but I mean we can.
Speaker 1:It's part of his journey. At eight months old he was life-flighted.
Speaker 2:Yep, he was life-flighted.
Speaker 1:He got extremely ill and ran a really high fever and was misdiagnosed several times and he got. Emergency room. In the emergency room we were there from 6 am and he got severely dehydrated and they weren't able to get an IV in him, and so they had to drill into his shin bone and send us to Dallas and we nearly lost Ezra at eight months old, at eight months old. That was very life-threatening and is a critical condition and and, if you're curious, that's where our first song that we have on iTunes.
Speaker 2:That's like the first.
Speaker 1:They may not even know we did that they probably don't know.
Speaker 2:It's not a big deal at all, but it is. It's our first song and the song message is still it hits home for us.
Speaker 1:But it's just been like getting them over Ezra's life. The Lord literally told me in the hospital room one night when he was so ill that he could barely move. He just said, even when it looks like nothing's happening, everything's happening Up here. Just I need you to come up here and see. And that just shifted my heart and my mind and I was like, if you're saying this, then that's what I have to do. And so so much of Ezra's life he's reminded me. You can't look at what is going on right now.
Speaker 1:I've promised you something more and you need to come up and see him, like I'm seeing him.
Speaker 2:So Absolutely, and so that was. He was 10 months old at the time. He's eight months old when you got like that 10 months old at the time, fast forward and he started think, started to turn around for him. He started to show some signs of At that age it's hard to tell what a kid is going.
Speaker 1:And I'll also say he was very ill from a young age. Two months old he got RSV and he just was continually sick with things and we were continually in and out of the emergency room Continually just dealing with and we didn't know. Like that's not really normal either. But yeah, at a year old, despite all odds, against all the things that he had been through, he was developing. Typically, he was still in normal range with everything, and I think we said this in another one.
Speaker 2:but he was hitting developmental milestones. He was saying words, my full blown words, and showing signs of communication that were on par or ahead with his peers.
Speaker 1:And I'm going to go ahead and say this even though I know it's controversial and please don't come for me or, todd, or we're not going to get into the whole thing but Ezra's regression was immediately following his 18 month. It was actually his 12 month vaccinations that he got at 18 months.
Speaker 2:Because he was so sick for his first year, we were behind.
Speaker 1:And yeah, so he got the vaccinations and ran a really high fever. And listen, this is not a anti-vax pro-vax we're just do whatever you feel like is best for your child. But this is what happened with ours and he ran a really high fever and they even the doctors even classified it as a vaccine injury with what happened because it was such a severe reaction to.
Speaker 2:He ran super high fever.
Speaker 1:It was super lethargic, um and yeah and that.
Speaker 2:Levergy lasted for over a year. It's like he was a zombie pretty much for.
Speaker 1:We lost all eye contact, we lost every word he ever spoke and I would say, you know, even still, I would say they say that the 18 month regression happens despite vaccinations. It's just a thing with autism and there were things before that you know very well could have led it. It was like the perfect storm kind of thing. So we don't, we don't blame my opinion was was the straw that broke? Yeah there was just a lot of other strong ones on that back before, but regardless yeah, we're not trying to.
Speaker 1:We're not trying to start a war.
Speaker 2:Yeah, that's in the end.
Speaker 1:Hide nor hair.
Speaker 2:Yeah, exactly Like the truth. The truth is he is who he is and the Lord made him fearfully and wonderfully, and we accept him for who he is. So I just want to lay that disclaimer out there. With all of these things we're talking about, yeah. Um, but that happened at around yeah, 18.
Speaker 1:Months.
Speaker 2:And then uh the rest of his life. You know what uh three years old he well.
Speaker 1:So just before, just before a year old, uh, we contacted a local therapy, uh in-home therapy service that went till he was three years old, called opportunities and he started early intervention. I just want to say that he started right away because we were super proactive, we were desperate.
Speaker 2:We had noticed the delays starting to show their head.
Speaker 1:Yeah, so he had. He had a solid. Well, I say, before he was a year old, it was probably like a year and a half old. Until he was three he was in early intervention speech, uh speech, occupational therapy and physical therapy.
Speaker 2:I'm sorry if our timelines are off.
Speaker 1:Our son is almost seven years old now, so we're trying to figure things out as we talk.
Speaker 2:But, um, yeah, yeah, so that happened. And then uh around two, somewhere around there, uh, his pediatrician uh worked with us to get an evaluation done at children's hospital and there is a massive waiting list and we won't get into all that, but there is a massive waiting list and we managed to make it to another children's hospital. We thought, yeah, in our own home state instead.
Speaker 1:Yeah. Uh we were on a wait list for a year and a half in another state. And, uh, a local therapist was telling me hey, amanda, there's, there's another option. You know you should talk to your pediatrician. And they, they were like well, you've already been on this wait list this long. If you get off, you know you can't get back on it.
Speaker 2:We weren't having it and we weren't having it, we thought we're not going to wait for years.
Speaker 2:Like we need and then well, hold up before before we go any further. We didn't know, and you may not know. If you have a young child, you can be on multiple waiting lists. It's not one or nothing. You can be on multiple waiting lists. So a lot of times, um, a lot of times, doctors won't do it because they just don't feel like it's necessary. But if, like, you, are the child's parent and you are ultimately their voice, so if, if you voice that enough and say, look, my child needs help and I want to get this intervention done as early as possible, yeah, you can be on multiple lists.
Speaker 1:I just want to say this we're talking a lot of practical things right now, but emotionally for Todd and I, we did not want this to be so Everything in us. We didn't know what that meant. We had never dealt with. I had worked with children, with autism actually, and when we were stationed in Germany and I fell in love with them and I'm so grateful because I do believe that the Lord prepared my heart and mind even to raise a son, and it just touches me.
Speaker 1:But in that point in time we were so clueless as to what that meant. We're afraid for his future, we're afraid for everything you know, and and we're just like holding on to Jesus, like, please, we're, we don't understand this and don't let this be. And we were in a faith, you know, faith community, like so many of you are, who are like you know, don't accept a diagnosis, believe. You know the Lord trusts him and and that's I'm not saying that that's bad advice, but it but you have to. You have to take care of things in the natural as well as the spiritual and not feel any guilt for that.
Speaker 2:I don't think it's something that you said before and I don't. I don't want to, I don't want to cause issues, but it's important to bring up. If a child had a disability that was visible, right Um, those same people would not be saying don't accept that diagnosis. Yeah, okay, your child has no legs. Okay, someone can't come up to you and say, well, don't accept the diagnosis, that they don't have legs. Right Now you can say to yourself listen, this disability will not define my child. That's very important and you can believe.
Speaker 1:For legs to grow back. Okay, we serve the God of the impossible. What's that little guy who doesn't have any arms or legs and he preaches and he says he keeps a watch, a wristwatch and a pair of shoes in his closet. You know, we can believe for the impossible, but also deal with what is happening right in front of us. Uh, anyways.
Speaker 2:I just I don't know that's that's important, and know that Jesus is in all of that right.
Speaker 1:All of the above you don't hear people saying that to parents of children with Down syndrome who are clearly missing a chromosome? And or is it an extra chromosome or the missing one?
Speaker 2:I'm not an expert.
Speaker 1:I'm not an expert, please don't judge me, but they have, you know, usually a physical where they can. It's physically able to be seen, whereas autism I can't tell you the amount of times I've heard uh people say this and it's so ignorant to say, please don't say this. Uh, oh, but he doesn't look like he has autism and you're like, oh, what does that even mean? What does that even mean?
Speaker 2:Well, um, point being, point being that, uh, your child was fearfully and wonderfully made, regardless of what their ability or disability is For us. We didn't understand autism. She knew it a little more than I did. My extent of understanding autism was I've seen Rain man, the movie, and so so many people. Yeah, and so everyone when you say oh, my goodness, autism, they'd say oh, they can. They, they're savant, they can play piano really well.
Speaker 1:Yeah, count really well, or I can take them to the casino and make a lot of money.
Speaker 2:No, no, no, that's you know, but at the end of the day, um, we were learning what we were dealing with yes and because of that I want to bring this up very shortly and very quickly. Is that, um, okay? When you find out you're having a child, you have a thought in your head of what that kid's gonna do.
Speaker 2:I'm gonna take this kid fishing, he's gonna be my camping buddy, or for her, you know, whatever that may be. You know, um, for three and a half years of my life, my son couldn't say I love you, couldn't say a single word, actually almost four years. So that didn't look the way that I thought it would, and I want to. I want to say this without offending. It might be impossible to do this, but just hear my heart that, um, I had to mourn the loss of a thought, yeah, and that thought being the child I thought I was going to raise, and instead I was faced with the truth that I would have a child that's different than what I thought. So I had to mourn that mourn, the loss of a thought.
Speaker 1:I think for many people that's the first step to really learn like, to really accepting their child. You have to mourn that, you have to let that go and get that out of the way, and so don't feel guilty if you just got a diagnosis and that's how you feel it, it's a natural part of the process.
Speaker 2:But I do want to say this we are here for hope and encouragement. Want to tell you this be encouraged to know that the child you have is 10 times the child you thought you would have.
Speaker 1:Yeah.
Speaker 2:It's 10 times the child you thought you would have it's. I cannot express the amount of ways, the amount of times that Ezra has blown me away changed my life forever.
Speaker 1:The joy that he's brought. It's been wonderful Timeline wise what we were talking about. We were fighting for diagnosis and then COVID hit and we got into this other clinic. We fought and everything shut down. Our actual parking lot became a testing drive-thru testing for COVID.
Speaker 2:For Dallas, fort Worth, it was impossible to get in there.
Speaker 1:And so we actually had our very first. It wasn't a formal diagnosis, but it was pretty much a diagnosis over via like FaceTime or whatever it was Skype, facetime something and we got the news I think it was like April 2020. And then we went back that fall finally.
Speaker 1:October to get the official and we got the official diagnosis, and until you get the official diagnosis, you can't get all you know. There's a lot of things that open up to you. I thank God he was already in early intervention and been at therapy at that point in time, in 2020, nobody was in therapy, so we had a year, nearly a year, out of therapy, but it was. That was a beautiful season for our family.
Speaker 2:It was it's important to say this as well to take a pause and just say, like we felt guilty I know I did. I felt guilty at times. Should I be taking my son to be evaluated for disorder? That might change everything? I had a hard time accepting that. That's what was going on.
Speaker 1:Oh, I wanted it to be a speech delay yeah. If you're there. I wanted it to be a speech delay so bad. I wanted it to be anything but that, because I didn't understand it.
Speaker 2:But, like she said, getting that diagnosis officially on paper. I have like a half inch thick packet from a neurologist and a clinical psychologist signed off on, saying yes, your son has autism, and here's the traits and here's what's going on and let me tell you, it opened us up to a world of I don't wanna say services, but there's been a lot of things that have helped us out, a lot of people who have helped us out Well, and that's where we found out.
Speaker 1:I think the most hard news to hear of all of it is no, he's not high functioning at that point. He is the lowest of the low, functioning. At that point he was, and still is, severely autistic. That was even harder, I think, to swallow for us, but it was like you know what. We have to move forward and we have to keep believing for him and keep doing all the things we can do to make him the best as where he can possibly be.
Speaker 2:Absolutely, and so that happened around three years old. And then COVID hit and shut down the whole world for about two years, and during that two years our son blossomed, our son turned into yeah, he thrived oh man like just this.
Speaker 1:He thrived, he wasn't even in therapy and he, I mean so much joy and he did. Yeah, he did really well.
Speaker 2:He really did. He was at home therapies.
Speaker 1:After that, you know, once it opened back up, once everything opened back up.
Speaker 2:I don't know that time was just a whirlwind because COVID was kind of our little time to shut away and relearn what it means to be the family that we should be.
Speaker 1:I don't know if we're gonna run over time, but I would say a big part of Ezra's story is in the beginning of 2021, in the 2020, but the very beginning of 2020, and we found out we were pregnant with justice. And justice is Ezra's little brother. The Lord told me, gave me his name years before and told me about justice, and there was never a time that our family needed justice like we did then. And oh, I'm telling you, having a little brother for Ezra. If you're scared of having a sibling, please don't be afraid, because the Lord blessed us in a way that we couldn't have imagined. Justice brought life into Ezra. He became a big brother and even though it's hard for him to make attachment not so much now he gets very attached to people.
Speaker 2:Oh, he's so attached.
Speaker 1:But then it might've been hard socially but it taught him so much in the responsibility aspect of having a little brother and a built-in playmate for life and then Well, it teaches him social skills that he is gonna need in the future.
Speaker 2:Like yesterday, he accidentally shot justice's hand in the door and justice, oh, he's crying so bad. And Ezra walked up to justice and he got in his face. I was like, oh, I'm sorry brother, I'm sorry brother, I'm sorry, baby brother, and it was just so beautiful to see that our son was able to appropriately and correctly ascertain what was happening emotionally.
Speaker 1:It's a big deal for a child- Having relationship with a sibling like that has been a huge thing, Todd. I think we should make this part one and do part two-.
Speaker 2:Part one.
Speaker 1:And share more recent things about Ezra and all of his obsessions and his loves and all that. Yeah, this is part one. I think there's more to this.
Speaker 2:We lost video. For those of you who are wondering-.
Speaker 1:What had happened? What had?
Speaker 2:happened, but, regardless, we're going to wrap this up this time around and we'll hit you guys on the next one, on part two, right? Yeah, part two All right, so listen, this was a little bit different of a flow than our three point topics but, regardless, if you guys are impacted by what we're talking about, or if it's something that can ring true with you, or maybe you have something that you would like to share with us, please reach out to us.
Speaker 1:Yeah, for sure.
Speaker 2:Not an Island podcast at gmailcom. That's the title of our podcast at gmailcom. We would love to hear from you. We'd love to be able to reach back out to you, so be sure to do that Also. Please rate, review, subscribe, follow our podcast wherever you listen to podcasts, wherever you're listening to this. It really helps us out. It helps to get the message out there. So there's a lot of people who feel like they are an Island.
Speaker 1:Yeah, send it to someone who needs it.
Speaker 2:Yeah, send it to someone who needs it, help them out. And yeah, All right guys.
Speaker 1:Well, God bless you guys.
Speaker 2:God bless y'all. I'm Todd.
Speaker 1:I'm Amanda.
Speaker 2:And until next time, peace out Peace out Bye, bye Å.
