Not An Island Podcast
Not An Island Podcast
Ep 5. Our Autism Parenting Adventure (Pt. 2)
In this second part of the Autism Parenting Adventure podcast series, we dive deeper into the challenges and joys that come with raising a child with autism. Join us as we continue our insightful conversation, sharing our personal experiences and offering practical advice on various aspects of autism parenting. Whether you're a parent, caregiver, or simply interested in learning more about autism, this podcast is filled with valuable information and heartfelt discussions that will leave you feeling informed and inspired.
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Hello and welcome to Not an Island podcast. This is a podcast series where we talk about faith, family and autism. We are your hosts. I'm Todd.
Speaker 2:I'm Amanda.
Speaker 1:We're the Johnson's, and in today's episode we're going to be continuing where we left off on last week's episode, which is about Ezra's story his life, his journey.
Speaker 2:Part two.
Speaker 1:And yeah, and our journey. So we have so much ground to cover. So, without further ado, let's get into this. So, first off, we're talking about recapping a little bit of the last episode we talked about last episode, his evaluation, covid, big baby brother, and also there's a few things we missed, so I'm going to let you take it.
Speaker 2:Yeah, I was telling Todd, I really feel like we could talk for months about Ezra's story just because there's so much there and so much ground to cover. But one of the things that I just remembered as I was, you know, hearing his story back that I forgot to talk about, which is a big thing. A big part of Ezra's story is that when he got really ill at eight months old, he had an injury to his the top of his, the root of his mouth and his throat, and after eight months old, he began to have major swallow issues which we hadn't had before, predominantly with more like solids, like he still was great with his milk and water and things like that. He wasn't drinking water at the time, but all of his purees he started to struggle to swallow and he began to like vomit all of them anytime I would try and so we went from before he got sick being able to eat a little bit, to really nothing. I think he was on formula until nearly two years old and we just bits and pieces of things.
Speaker 2:We started to get him to eat and when he started therapy, one of the biggest things that the occupational therapist was working on with him was feeding therapy and helping him, you know, learn to swallow. Also, you know, helping with his sensory versions, because he had a very short list of things. He would even try, but that mixed with his allergies, you know there wasn't a ton of options for him, but she actually told me at the time something that I was clueless to that the same muscles that you use to eat are the same muscles that you use to talk. And as his muscles were underdeveloped in his mouth and throat and tongue because of the swallow issue and so, yeah, so that was a big part of, you know, his also his speech delay was that his muscles were having a hard time actually like being able to form the words.
Speaker 1:So yeah, so we dealt with that for a few years and it was pretty rough. But you know, he's come a long way, which brings me to my next point, which is the in between. In between then and now, everything that we as a family have gone through together to support him, and so we're going to talk about growth and regressions and meltdowns and all that. So what does that look like?
Speaker 2:Yeah, I think it's important to touch on as well, like we were talking about his feeding and swallowing. He had a tonsil ectomy about a year ago as one of the things, one of the parts of his journey and up into that point we still gagged and choked almost daily. It would cause him to vomit and you know he already had those. He had those feeding issues and swallow issues and everything else, but his tonsils were huge and infected and causing him a lot of problems, causing him to be very ill. He from from the point as it was born until the tonsils were out.
Speaker 2:I think it was like every time the wind blew it felt like we were dealing with another illness, which was not easy. But I just I don't not that I'm trying to like, yes, get your kids tonsils ripped out, but it took us a really long time to like first, find out what was going on. Second, you know, actually follow through with having a procedure like that, because that's really scary with a child who can't communicate to you, and it was really scary and it was very traumatic and it was very hard. He ended up hospitalized after it and you know it's not something you want to relive, but at the same time, he's been well now after having it for nearly a year. He's the ear and chronic ear infections. A lot of the things we were dealing with have stopped and so, yeah, it's worth checking into all of those things if your child is having similar issues, for sure.
Speaker 1:For sure, yeah, and that that ties into his growth. He's had a lot of mental growth, but he's also had a lot of regressions, and so it's it's been it's. A lot of times I feel like we take one step forward and two steps back, but, truth be told, you know it's all part of the growing process, and so we're actually curious if you as a family, if you're on YouTube right now and you're watching, we'd love to hear from you, Put in a comment down below, and let us know what growth and regressions have looked like for you as a family. We'd love to hear it and just be able to have that community and talk back and forth.
Speaker 2:I think it's something that's not touched on as much or something I haven't heard about as much because a lot of people talk about and it's also a part of our story a major regression and we did experience that. It was massive and it was nearly overnight and it was huge. But then throughout the years we'd make a lot of ground and we'd work really hard and boom, it was like one day illness would hit or something would hit. And here we are, 10 steps back and we've lost the 10 words we had again, and it was very much baby steps and feeling like you get hit by something and pushed back. And I can't even imagine what it had to feel like for Ezra because he was working so hard.
Speaker 1:And then you know, Would hit regressions, but in the long game he's made so much ground that the regressions look mild compared to what growth he's had. So but one thing that has really helped him socially big time is public school. He started public school back in kindergarten well, about a year and a half ago now, and you know he's made a lot of friends in school. He's made a lot of connections in school.
Speaker 1:And really so have we. We've made a lot of connections with some friends, some many dear friends, who are parents to a child with autism as well.
Speaker 2:I genuinely never thought that we'd send our children to public school. That just wasn't what I had planned. But with Ezra things were so different and you know, we had been in therapy for all the years, working as hard as we were and I actually think it was one of the therapists that first mentioned it to me and she was like I mean, you really need to think about public school and there's a program that starts much younger than kindergarten. Even Like Ezra could have been in school, I think two years before brick A3, he could have started. I wasn't ready for that, but I really began to pray about it because I was just so nervous for him to go in and to not be able to come back and tell us what had happened to him that day. You know, or you know encounters that he had had.
Speaker 2:It was a huge fear in my heart and I really feel like God just started to address that fear and I had been praying about it and I was invited to a women's conference I think it was that spring before school was gonna start, and one of the ladies that was there actually was formerly a teacher at the school that we were gonna be enrolling Ezra in, and she was like you have to meet my friend who is the assistant principal at the school.
Speaker 2:He was starting at the early childhood center and meeting her was just like the confirmation that I needed that, one, we were doing the right thing. But two, she informed me look, all of the major decisions that we make, I'm on his team for that. So it was like a familiar face, even if you have to go into your school and say, hey, I just wanna meet the person, I wanna meet someone there. That connection and knowing, okay, I've got somebody with my child's best interest at heart, who's there boots on the ground with him, that really helped us, I think, be able to release. It was still hard and I still cried a lot.
Speaker 1:Yeah, it was difficult, for sure. We had to send a mutant cry, but I was like no, yeah, he was a trooper, but, with that being said, he has absolutely blown us away, especially this past few months. He's been in a new class in the first grade, but this kid has blown us away. Just the things that he's capable of and the things that he can do. For sure we're going to be talking about that in a few episodes from now. Three different ways that we maybe underestimated him as parents 100%, and now that's one of them.
Speaker 1:You see your child every day and you see just everything that he goes through or he or she goes through, and sometimes you don't see the forest for the trees, you don't realize that that kid is capable of so much more than you could ever even give him credit for as a parent. And that's exactly our situation. That's exactly what happened.
Speaker 2:Yeah, I think what our expectation, I know man was like oh, he needs this socially, and we knew that the routine would be helpful, but we had no idea that what would begin to come out academically and that's been so amazing to witness.
Speaker 1:Which brings us to our third point, which is where we are now. So we are he's in the first grade now. We as a family are pushing right along. His baby brother is two years old and his best friend and worst enemy at the same time. But yeah, I mean, ezra has made a lot of friends from school and we've also really had the honor and the privilege of being a part of this group that is funded currently through the state that we live in, and what it is is. It is a service for school-aged children in public schools who have autism, and I'm telling you, it's awesome. Like once a month we'll get together and we have like a family night, and then last summer they had a full six week program.
Speaker 2:They school kind of thing, it was.
Speaker 2:Ezra loved it. He begs to go back and actually right now they've been fighting for a grant and it's so hard. They're doing everything they can to help service the children in our area. They're honestly very underserviced and they're doing the most incredible things and, yeah, like Todd said, we feel so honored and privileged to get to be a part of something like that. That's bringing families together. We've met a lot of families through that. We've gotten close to people who work within the school system, who are a part of it, who advocate for us and who are boots on the ground for us. So it's huge. I wish every school, like every public school system, had something like it.
Speaker 1:Truth be told, every person I'm pretty sure every person on their staff that does this. You know they're all full-time teachers, administrators in the education, public school system, public education system in our area. So they do this genuinely out of the goodness of their heart.
Speaker 2:That's it.
Speaker 1:They could be anywhere else doing anything else with their own time, which is very valuable, and instead they choose to reinvest that into children and families.
Speaker 2:I think the most incredible thing about them is most of them have their own journey and their own story with a child maybe not with autism, but with special needs. And the fact that they have children with special needs or even teenagers with special needs at home and they're still going as hard as they are for our children, it's just.
Speaker 1:It makes such a difference. So shout out this program is called. Aspire, it's called Aspire.
Speaker 2:Yes, when we do our school episode we should go more in depth with them, for sure.
Speaker 1:Maybe we can have someone on from Aspire, who knows?
Speaker 2:but we could talk forever about them.
Speaker 1:I'm telling you what I'm getting at with this is his social growth in the school system. Coupled with his social growth, it aspire, has just made all the difference. He's made a lot of friends. Of course that helps.
Speaker 2:We have play dates and things yeah actually, one of the first day of school, of kindergarten, we met a couple who love the Lord very deeply and their son was starting his first year in that class as well, and they've become very good friends and we've become really good friends and it's like, had we not stepped out and given the school system a chance, we wouldn't have.
Speaker 1:You know, Made so many friends and he wouldn't have made so many friends. That's the thing. Like, we can make all the friends we want to, but this is really it's about him, it's about these kids and so those programs. They wouldn't have happened if we wouldn't have chose to go the public school route.
Speaker 1:So for you moms out there, you dads out there who are against public school, we totally get it. Our heart was right there with you for the longest, but in our particular case it was. We just felt a very strong urge and a pull.
Speaker 2:And you never know, this may be a season and there may be a season where we do homeschool. We're, our hearts and minds are so open. Now Think we were, thought everything had to go a certain direction and now we're just like you know, we have to kind of go with the flow, and you know our hearts. We would love to live in a place that had a specialized school, you know, but that's just not the cards that we're given.
Speaker 1:But one more thing that isn't on our notes, one more thing that has really helped and I could go on and on about, and maybe we could have this person on for an episode as well, but there is a therapy program in our area is equestrian therapy, horse riding therapy for children on the spectrum and children with special needs, Helps our core muscles, helps their socialization, helps a lot with these children and Ezra's part of that and let me tell you like.
Speaker 2:And that all happened through the school system.
Speaker 1:That all happened through the school system.
Speaker 2:They were taking the children twice a month to the ranch that's literally right up the road from where we live and giving them that opportunity to experience that, which is just huge.
Speaker 1:It's massive.
Speaker 2:And it's been a huge thing for Ezra and now he's in therapy like independently, not through the school I take him. He just started back and he loves it. And I don't know, you know a lot of your children probably have similar kind of things. But Ezra has a lot of tightness in his hips and he has had low muscle tone, gross motor delays and fine motor delays. But with those gross motor delays and tightness in his hips and he has a really severe toe in and riding the horse. The warmth of the horse, you know the way that he's seated, it's working core muscles. It's a lot of work.
Speaker 1:Yeah, that's making those muscles start to push that foot outward a little more, which is really awesome. There's so many awesome things and we'll have an episode about this, if not with the person that runs this.
Speaker 2:We could talk about the people there for so long too.
Speaker 1:It's amazing, but regardless, that's been his growth. That's been kind of this past year for us. Let's talk about some of the struggles and some of the obsessions he has, yeah.
Speaker 2:I just wanted to share one other thing about school, and that is I just wanted to share an example of something like. That was huge to me. Ezra's starting school. In the socialization the routine, One of the things he's doing at school is eating in the cafeteria where it's loud and overwhelming and typically in situations like that Ezra can't eat and he can't say.
Speaker 2:Still, every major event or anything with family, like family dinners and stuff, thanksgiving, christmas he was just so running around and last year, for the first year ever, he sat in a Thanksgiving and Christmas dinner with the whole family and I feel like I know that's something. It seems like something small, but it's so huge to see him do that and I have no doubt that him being in school and being in those settings and being challenged in that way is why he was able to do that Well.
Speaker 1:it meant a lot, not only to him, which is the biggest part of this, but it meant a lot to everyone else as well to be able to see him partake in the family dynamic as well as, like I don't know, just get to be loved by everyone and love back Like it was a big deal especially for six year old. Well, yeah, six at the time.
Speaker 2:No, he's five, he's five.
Speaker 1:I see he was still five, yeah, but yeah. So struggles and obsessions something that obviously, as an autism parent, you I'm sure deal with all the time. We deal with it all the time ourselves but some of his struggles right now he has they've gotten a lot better lately, through the past year as well but his struggles, a lot of his struggles, revolve around something he's hyperfixated on.
Speaker 2:Yeah, that's our current, I think the hardest thing that we're currently dealing with with Ezra, because hyperfixation can be a really good thing, but for Ezra it's like almost like a prison sometimes Because he can't put his genes on without having his toy ambulance in his hand.
Speaker 2:And that's not so much. Just when you're trying to communicate with him and he is on a loop, he just goes through, kind of I don't know that's the best way to describe it. It's like he's stuck on a loop and he can't get out of it, and it may be that he's talking about whatever is, whatever random thing. He has a lot of obsessions. I think we could do a whole episode on obsessions.
Speaker 1:Honestly, yeah, but regardless, even through those obsessions, we see this growth he's making. We see all the work that's being put in, not only by other people, but we see him putting in work. Last night he sat down and wanted to read a book, and so he doesn't know how to read, and so I'm helping him, I'm working with him, and you can see he's legitimately trying, like he's trying. So hard. He wants to learn, and so that's where we are now, and it's just been a really awesome time.
Speaker 2:I think what you're even saying in that is that the obsessions, even though they can be a trap and almost a prison, they're also fuel.
Speaker 2:His obsessions are what has caused him to want to read certain books, his obsessions are what has caused him to want to draw and want to write when alert, to write certain words. Even though those things he's obsessing over are sometimes the thing that's holding him back, they're also what's pushing him to thrive in other areas. So, yeah, it's kind of a complicated thing, but it's like he's having positive productivity sometimes. And then other times it's like okay, buddy, we got to get out of this loop so we can just do basic tasks. You know what?
Speaker 1:I'm saying Absolutely. Of course, communication is always a struggle, even now, but we'll keep you updated, we'll keep everyone updated with our progress as we go.
Speaker 2:We'd love to share some of his obsessions, because they've changed throughout the years and then kind of we go back to some of them. But he has a lot currently.
Speaker 1:You know what Another comment you can throw in here down below if you're on YouTube. What are your child's obsessions?
Speaker 1:Or what is the hyper fixations that you deal with as a family. How do you deal with them? How do you find ways, whether it's redirection or whatever you use? We'd love to hear. We're all ears and we'd like to just find out how you guys do this. So, recapping, we. This is part two. We talked about part one last episode.
Speaker 1:This episode, we talked about part two of Ezra's life and we covered a lot abbreviated version, but we did cover a lot and, yeah, we really want you guys to be able to come away from this knowing that autism is a journey as a family, like it's not something you have to fight against it. For us, we've learned, it's something that you can embrace and you can take the good with the bad and still see that God is in it all, like he's in the middle of it all. And yeah, so that's been this episode. Also, listen, if you are on YouTube right now and you're watching, please, please, please, subscribe like, hit the bell so that you can stay up to date with our stuff.
Speaker 1:If you are on Spotify, apple Podcasts, pandora, pandora, maybe, whatever, anywhere you're at, be sure to follow us. Hit the button to follow us and leave a review. That helps us to be able to get this message out, cause really, this message is all about advocacy, it's all about hope, it's all about love and supporting these families. So help us out, help us get this message out there. And yeah, I mean, it means a ton to us and we know there's a ton of other families out there who could hear this message of hope and acceptance and faith.
Speaker 1:So you wanna pray this out.
Speaker 2:Yeah, let's go. Jesus, we thank you for Ezra's story and for his journey, and we thank you, lord, that it's just the beginning. We thank you that everything he's walked through, even up to this point. We just give you glory that he's able to encourage other parents out there, that his life is able to encourage other peers of his, that nothing is impossible with you, and so I just thank you for every person listening today, and I pray that they've been so encouraged by all the things that we've said and talked about and that maybe there's some things that they can really relate to, or some things that they thought, man, I thought I was the only one going through that. Lord, I just pray you comfort them right where they are and let them know that they're not alone. We love you, we honor you. We give you the glory in Jesus' name, amen.
Speaker 1:Amen, we are the Johnson's. I'm Todd.
Speaker 2:I'm Amanda.
Speaker 1:And thank you for listening and until next time. See you all in Jesus' name. Bye, bye, theta.
