Life Unmastered
Jase's Speech Delay Journey: Part 1
As we navigated our son's speech delay, we bumped into roadblocks and unexpected turns like lackluster therapy sessions, less-than-effective telehealth appointments, and a misdiagnosis.
What happens when a diagnosis feels like an ill-fitting shoe? We wrestled with this question which led us to take a pause, do some research and trust our guts. When it comes to your kids, no one knows and understands them better than you do and our journey with Jase is a testament to the power of parental instincts.
Join us as we walk you through Jase's speech delay journey, for the first time ever, from start to finish!
Thanks for joining us for your weekly dose of confidently unqualified advice!
Let's keep the conversation going! Connect with us below!
Instagram: www.instagram.com/lifeunmasteredpodcast
Email: lifeunmasteredpodcast@gmail.com
Website: www.lifeunmasteredpodcast.com
As we navigated our son's speech delay, we bumped into roadblocks and unexpected turns like lackluster therapy sessions, less-than-effective telehealth appointments, and a misdiagnosis.
What happens when a diagnosis feels like an ill-fitting shoe? We wrestled with this question which led us to take a pause, do some research and trust our guts. When it comes to your kids, no one knows and understands them better than you do and our journey with Jase is a testament to the power of parental instincts.
Join us as we walk you through Jase's speech delay journey, for the first time ever, from start to finish!
Thanks for joining us for your weekly dose of confidently unqualified advice!
Let's keep the conversation going! Connect with us below!
Instagram: www.instagram.com/lifeunmasteredpodcast
Email: lifeunmasteredpodcast@gmail.com
Website: www.lifeunmasteredpodcast.com
As a parent, you never want there to be something wrong with your child.
Speaker 2:Well, you don't draw it up that way. I mean, when you envision becoming a parent, it's definitely like, oh, everything's going to be perfect and they're going to be the smartest and brightest and most gifted.
Speaker 1:Yeah, you want them to live a simple, easy life. Yeah, so, as promised, this week we're going to be talking all about Jace's speech delay.
Speaker 2:Yeah, I'm pretty excited. I feel like I'm going to learn just as much as the listeners today.
Speaker 1:It was definitely when we found out about his speech delay. Originally it was an interesting time. We had just moved to Colorado. I mean, we kind of had an idea.
Speaker 2:That he wasn't as along as he was supposed to be.
Speaker 1:Right, but the majority of it went down while we were in Colorado and that was just a really busy time.
Speaker 2:So kind of put the timeline in perspective. We moved to Colorado a year later was 2020. So the disease that shall not be named was here Right. Everything basically shut down and in the middle of it we were trying to get how do we help for our son as far as his development?
Speaker 1:Right, okay, so let's start at the beginning.
Speaker 2:Yeah, I feel like this episode is going to be more of like me interviewing you type thing, because there's a lot of info here I don't know.
Speaker 1:Yeah, I mean I think we've done a good job of communicating it with you, but there was so much that happened. So Jace's speech his delay is one of the main reasons that I started my Instagram account Bubbles and Belly laughs because I wanted to track his speech and his progress as we started things and also our family was in California, so I wanted it to be something that they could see what we were doing as well, and I've been very open about his speech. It's something I get asked about often not so much now because he's made so much progress but, especially in the beginning.
Speaker 1:I got asked about it all the time and I'm always willing to share what I can when I can. And since we briefly touched on his speech last week, and even though it's something that we talk about all the time, we've never really talked about it. You know, complete from start to finish.
Speaker 2:Yeah, and the adventure it was.
Speaker 1:Right, it's such a journey and so I'm really excited to be doing it this week on this episode. So in the beginning he was saying a few words.
Speaker 2:Yeah, I remember talking to him like obviously as a young kid and like we get like I think he said bowl or like wow was my thought, was his first word was that one time he almost fell down and he like looked at us and was like whoa.
Speaker 1:And we got it on video. I remember we were debating whether that was an actual word or not.
Speaker 2:I counted it because he finally said something that I understood.
Speaker 1:And once we, once he was actually in speech, they, they do count that as a word. And I remember when I told you that you're like I told you, but he was saying, yeah, a few small words, ball, mama, dad, basic words. He had a few of them.
Speaker 2:But even that, like I felt like a lot of the time, even those single syllable words, like only you and I could pick up a lot of the time, like people would look at us like what We'd be like. Oh, that's ball.
Speaker 1:I feel like that's true of any kid. You know they say things and, as his parents were around them all the time, so we can understand them more than you know the average person, so I think that's pretty normal. But I remember I felt like he was making progress in his speech and it. You know he was still so young. So he he was at the point where he was supposed to be talking and we brought him in at around 16 months to the doctors because he had kind of we had noticed that he was digressing and he wasn't saying anything anymore.
Speaker 2:Yeah, he stopped talking like communicating. Almost. It was just like he would just sit there and be in his own world and play.
Speaker 1:So we thought yeah, I mean there was other than his speech, though there was nothing else off. You know he was still, we could get his attention, and there there wasn't. It was just like his speech. I'm like what, we should be making progress here. You know he's almost one and a half. So we brought it up with his doctor and you know, at that time, even still now but at that time he was very physically advanced.
Speaker 2:I remember her saying that, like she was hyping up, he's like well. Or she was saying like well, look how, um he moves in his dexterity and he's able to do that. So like he's physically advanced, and I thought that meant we had like a pro athlete on our hands.
Speaker 1:He might be, but yeah, I mean he was, he was climbing everything. He was so brave.
Speaker 2:He's still I mean well, he walked so early, didn't he?
Speaker 1:Yeah, I mean he. So he, he started crawling at exactly five months and then, shortly after that, he was pulling himself up on things and, um, he was walking before nine months. And I remember, just a few weeks after he started walking, he was literally running and I don't think that that's completely uncommon. I think that there's plenty of kids that walk before age one.
Speaker 2:He was the first kid I ever been around, so my mind was blown.
Speaker 1:But I do remember. Like man, it would have been nice to have a kid that was immobile for a little bit longer. But Carter actually, she ended up walking at nine months too.
Speaker 1:So I don't know, maybe that's more normal than we think, but I remember he had no fear of anything and I think because of that he took all these risks and chances and he was like, yeah, I can climb up this ladder or a pickler or whatever, and so he was just very coordinated, and so the doctor was explaining to us that sometimes, when kids are so physically advanced that they're putting all of their efforts and energy into developing this part of themselves, and so they tend to be delayed in other areas, yeah, I remember when she said that like I just remember walking out the doctor's office with you and you're like what's wrong?
Speaker 2:I'm like well, the doctor just told us we're gonna have a big dumb baby, always so gentle and kind with your words. I mean, he'll be super strong, but he won't be able to communicate with you.
Speaker 1:So, yeah, I was like so we walked out of that appointment and I was like, okay, well, if this is normal, that's fine. She suggested that we wait a little bit before we start seeking out further therapy or testing or anything, because she said that she had seen this before and it was typically pretty normal, especially in boys.
Speaker 2:Yeah.
Speaker 1:So at that point we were just about to have Carter, and so it kind of worked that we needed to wait anyway.
Speaker 2:Yeah, the timeline was definitely thrown off, I would think because newborn, so Right.
Speaker 1:And then, once we had Carter, we were in the phase of packing up to move because we were in Colorado before she even turned three months old.
Speaker 2:Yeah.
Speaker 1:So everything just kind of happened really quickly between that appointment and us getting to Colorado. And then once we moved to Colorado, we got here in May and my mom came to visit at the end of June. So she was here really early on and during that visit she helped me set Jase up with speech through the state. She had gone through something similar with my youngest brother and so she was familiar with the process. So she actually came with us to the evaluation with the state and he was approved more than qualified. They didn't even have to question whether he needed speech. It was very obvious.
Speaker 2:Did they give him like a test or like what did they check for?
Speaker 1:Yeah, so I sat with him at a table and there were three other people there that were evaluating him for different things.
Speaker 1:I didn't know who was evaluating him for what, but they basically just kind of watched him. They would ask him to do a few things, ask him to kind of answer some questions which he was incapable of answering any question, yeah, but they would have him point to certain things and they just kind of had papers in front of them and were kind of taking notes and evaluating him and there was a point system. But basically at that meeting they had told us yes, based off of these numbers he qualifies. And they got him set up very quickly. So I will say from the time that we made the appointment for the evaluation to the time that we had our first in-home visit was very quick.
Speaker 2:Yeah.
Speaker 1:So that's probably the one and only thing that I appreciated with doing speech through the state. Got it so at our first at-home visit which was actually nice because we were new to the area, wasn't super familiar with the Colorado Springs- area.
Speaker 2:I remember that, and it was not a nice area, so the fact that they were doing in-home visits was definitely like put us at ease.
Speaker 1:Exactly so when they showed up, I don't know if it was because I was still distracted with having a newborn and unpacking the house and whatever or I just like and I just wasn't paying attention, but I really had no idea that three women were going to come into the house each week to work with Jace on different things. So I thought it was just speech.
Speaker 2:Yeah, I remember when, like the first time they came here, like I was like peeking out of my office door, I'm like what is going on? Like it was like hi, hi, hi. Like every two minutes somebody else was walking in. I was like what?
Speaker 1:happened, I know so. And actually that first appointment there was four people because there was like the main head person who kind of oversaw those other therapists.
Speaker 1:But after that weekly we had three women at the house. We had a speech therapist, a behavioral therapist and an occupational therapist that were each supposed to be working with Jace on different things. I was kind of taken aback because I was like what's happening, like this is so much more. But at the same time I'm like okay, great, they're really going to work hard to try and help Jace.
Speaker 2:It felt like you had an entire team there to help you with Jace and I remember you talking about it and it was just like you knew from the beginning that this might not be the most productive use of time.
Speaker 1:Yes, so I from the second or third one, when I felt like we spent the whole time sitting there, just like it felt like we were chatting and they were giving me pointers and things to work on, but I felt like there was zero, there was very little interaction with Jace, and but I was like, okay, let's just, let's just go along with this, because they're the professionals, they know what they're doing right.
Speaker 2:Well, what was like a session, like Like, what were they doing?
Speaker 1:So we would go downstairs where all like the playroom was, and they would just kind of we'd all sit on the floor and they would talk to me about certain things that I should be working with Jace on, or they'd ask me questions and Jace would just kind of be playing and sometimes they would like pipe in and like try and do something with him, but for the most part our sessions were spent with them talking to me. Maybe I'd ask them questions or they would sit and watch Jace, but there was so little time actually spent with them working with Jace and a lot of times we would get distracted and just be talking about like whatever Well, how long was the session?
Speaker 1:An hour.
Speaker 2:So for an hour you and three other ladies are downstairs while Jace basically played, Basically Okay.
Speaker 1:Yeah, and I don't know. This was my only experience with it, so I don't know if this was normal. Or that's how it's supposed to go, maybe at his age they can only do so much. I don't know, but I was feeling defeated very early on because I didn't feel like we were making any progress. And then I was like it's gonna be hard to make progress because they're not really working with him.
Speaker 2:Well, it was once a week, right, correct? And I remember multiple times, while we were like working with them, one of them would call from like literally I thought, like from outside the front of our house, like well, the other two couldn't make it, so I guess we should just cancel, or something along those lines.
Speaker 1:No, I think that they would still come if one of them couldn't.
Speaker 2:Oh, okay, I thought they were canceling a lot, though.
Speaker 1:No, I know that if we had any illness.
Speaker 2:so if you were sick, if I was sick, if.
Speaker 1:Carter, if anybody was sick within the week then they could not come into the home because they work with other kids, which makes sense. So there was a lot of cancellation with that and that was unfortunate because we only had so much time to work with them, because by the time that we started Jace phased out at age three, so we really only had a year of being able to work with the state for speech in that in-home capacity and so pretty early on into our sessions I would say about maybe like six months in they're already starting to prep us and prepare us for Jace to phase out.
Speaker 2:Of their program.
Speaker 1:Of their program.
Speaker 2:And into the next Correct. Okay.
Speaker 1:So they were working with us. I can't remember the name of it. I'll have to find it, but basically it's something where they approve you to get speech within the public school system.
Speaker 2:Oh, okay.
Speaker 1:Which, as we talked about last week, we don't have Jace in the public school system and at that time we had planned to home school, so that's not something that we worked like we were really concerned about.
Speaker 2:Yeah.
Speaker 1:I think they set us up with it anyways, in case we changed our mind. So. And then after that, they started doing more evaluations and running more tests because we had made zero progress.
Speaker 2:Yeah, in that time.
Speaker 1:Which is, when you think about it, it really wasn't that long that they were working with him.
Speaker 2:But again, they weren't really necessarily working with him hands on, from what it sounds like.
Speaker 1:Right, and then towards the end of it is when COVID hit, and so they wanted to switch to these telehealth appointments, which is where they're meeting with us on a computer screen. And, oh my goodness, we did I think we did two of those and I'm like this is terrible. Jace would not sit in front of the screen.
Speaker 2:Yeah.
Speaker 1:To expect any two year old to do that. It just doesn't make sense almost three year old. And so we just I was like, okay, we're done with this, this is a waste of all of our time.
Speaker 2:I just picture them on the other side of the screen Like Jace cat, jace cat, cat, cat. Like, oh, it's not working.
Speaker 1:Yeah, they'd be like yeah you know, jace, come show me a block, what color is the block? And he'd like chuck the block at the computer screen, like, so it just wasn't working. And so then they're like, okay, well, let's see what we can do. So they had us do some additional testing for autism.
Speaker 2:Okay.
Speaker 1:There was a few things that they were worried about. So one was pointing, he like, wouldn't like point at, like Jace, where's the tree? You know he'd go walk up to the tree.
Speaker 2:Oh, yeah, yeah, yeah, I remember that.
Speaker 1:But that wasn't something that I knew he was supposed to be doing. So then, once they mentioned it, we started working on pointing and within a week, he was pointing at everything.
Speaker 2:That I do remember. You're like he's supposed to be pointing at things instead of walking up to him. So we just started pointing at stuff around the house like TV and like stuff like that, and he picked it up instantly.
Speaker 1:And we started doing things that like putting things that he wanted up high, oh yeah yeah, yeah, yeah remember that, so he had to point to it because he couldn't walk up to it and grab it. And so once we kind of figured out how to, you know, teach him certain things, they came to him really easy. You know, he's a smart kid, he just we were first time parents dealing with this, and we were. It was like we were all learning together.
Speaker 2:It was so weird too, cause you mentioned he was a smart kid and I remember, like our parents and everybody who had had children, telling us like he's smart, like he's, you can see him analyzing toys and figuring out how they work, and he knew what to do, just couldn't communicate.
Speaker 1:Right, and he would. You could see him watching our facial expressions and our body language, because he couldn't verbally communicate with us and I think because of that he was having a hard time understanding what we were telling him to. That's why we would give him simple directions, or even two step directions, and he couldn't follow them, and so he would take our facial cues and our body language and that's how we would kind of determine what we were asking of him. And so, anyways, because he would respond in these ways, they kind of were like okay, well, he's, he can't talk, he's got this speech delay and there's certain things that he's not doing that he should be doing, and so they're like we think he's autistic, yeah, and I'm like, okay, well, is there an actual test for this?
Speaker 1:So they did the test for him. It's on a point system. The more points you have, like the more either on the spectrum you are or the more they can say give you like a definitive answer. But again, the spectrum is so broad that they're like, you know, depending on where you could have one or two points and still be on it. Well, so they give us this test. J scores a one. They wanted to give him a two and I fought him. I fought them on that second point because it was the pointing.
Speaker 2:That took a week for him to learn.
Speaker 1:Exactly, and by the time we took this test, he was already doing it. So I was like no, that point doesn't count. And it again, it's not that I would have a problem with him being autistic, I just didn't want to plop this label on him because they couldn't figure out what else was going on.
Speaker 2:But also it was, I remember, being frustrated because it almost felt, like you mentioned, like we were at the end of our time with them and so, like their report is due, I assume, at the end of our time, and it's like, well, what'd you find out? And it almost felt like they didn't want to leave the space blank or undetermined. So it was kind of like, well, here's one point, so that's what it is.
Speaker 1:I think that's actually pretty accurate, and I think that's why we started getting really frustrated at the end and upset. I was upset that they were just trying to like slap a band-aid on something or just kind of like you know. They also gave him test, like they wanted to talk about speech aprexia of speech, I think it's how you say it which is basically where you could say this word to them and have them repeat it, and they would say it differently every single time because, their brain hears it and like can say it back.
Speaker 1:I don't know a whole lot about it.
Speaker 2:We might need to get you tested for that. Why we're on the subject.
Speaker 1:I think that we've talked about.
Speaker 2:You do. That was an entire sentences, though, so I don't know what that is.
Speaker 1:I actually would. It'd be interesting, I think, for me as an adult to be tested for dyslexia, because I think that that might be a real thing. We do know that I have ADHD, but I think that dyslexia might be something that I struggle with, but I've never officially gotten tested for it, so but anyway, and that's something actually we do think that Jace might struggle with.
Speaker 2:Also yes. So anyway, different episode. Yes.
Speaker 1:But they can't officially diagnose any child with aprexia of speech until the age of five.
Speaker 2:Okay. So like they say that was kind of thrown out there, like well, this could be it, but we can't prove it, so don't worry about that one.
Speaker 1:Exactly. And then they were also thinking, okay, well, maybe there's ear fluid and he needs tubes, like if he's got fluid in his ears, he can't understand us completely. So, anyway, we decided, after they did all of this, that we were just done with the state. We're like, okay, we feel like you're just trying to, you know, make something out of this. You don't quite know what's happening and we were starting to feel uncomfortable. So we're like, okay, we're going to be done here.
Speaker 2:I mean, you already went over the fact that, like the state would have helped us if we were planning on going into public school, but we were kind of already at the end of the road with them because we were going to be doing homeschool and we were already frustrated with them for the quick diagnosis and just blanket label they were trying to put on them. So at that point I remember it was like well, they mentioned that he might have fluid in his ears. So let's look into that and see if that's what's going on.
Speaker 1:Right. So from there we took Jace to the doctor, to his pediatrician, for one of his well-baby visits and she ordered the test. So she ordered a hearing test, which came back mostly fine. It was hard for him to completely finish the test since he couldn't understand all of what they were asking him, which?
Speaker 2:means we gave him a hearing test, but he didn't understand the directions Exactly, yeah.
Speaker 1:So they're like, based off of the sounds and what we could evaluate, we don't think that there's any issues here. But after that, because it wasn't completely conclusive, his pediatrician also ordered a test to see if there was fluid in his ears and that came back completely fine. There was no fluid in his ears and I will say it was a little disappointed because I was hoping we just had this easy fix. All right, not that surgery is easy, but at least we're like okay, he just needs tubes.
Speaker 2:But yeah, that's an identified problem with a solution. Exactly yeah.
Speaker 1:And so I was. I just feels weird to say this, but I was disappointed that he didn't have fluid in his ears.
Speaker 2:He's normal. He's normal. I wait like a minute here.
Speaker 1:I think that at this point we knew that he didn't. He could hear that he didn't have fluid in his ears. They can't officially diagnose for aprexia of speech or even further test for that. So at this point all we know, the only professional opinion that we have, is that he's autistic, and that opinion is based off of the fact that he has a speech delay.
Speaker 2:Yeah, which is originally why we asked for help.
Speaker 1:And actually just to back up really quick, we did officially. He did officially get diagnosed with a sensory processing disorder and that can have a speech like speech delay is one of the things.
Speaker 2:You're gonna have to explain to me what that is.
Speaker 1:Sorry. So one of the therapists that came to the house of the three was an occupational therapist. So basically, you remember we talked about how Jace was like physically developed, and he had no fear. Well, with that no fear. Remember how he broke his foot and walked on it for a week before. Yeah, before we knew Right cause he just like he occasionally he would like limp or, like you know, step on it. It looked just like he was stepping on it, funny, but he was like showing no sign of pain.
Speaker 2:I thought it's cause we had a big dumb baby.
Speaker 1:Oh my gosh, you're so Stop. So he just like he needs to feel, like he's constantly throwing himself against our walls and jumping off the couch onto the floor and like doing all of these things cause he's seeking that sensory output.
Speaker 1:And so that's where I remember she was putting, putting those like heavy weights on his arms and the vest and because he just like it's almost like he can't feel gravity and so he's searching for that and so anyways, through lots of testing and stuff, we're like you know he checked off almost every box and that's like why you know he needs he gets really nervous when we go into those big spaces, like in the sanctuary at church he needs the headphones for loud noises.
Speaker 2:Like when at Monster Jam and stuff definitely, or even in the movie theater, he wanted his headphones on.
Speaker 1:Exactly Well, I mean, I feel like we all need headphones for Monster.
Speaker 2:Jam.
Speaker 1:It was so loud.
Speaker 2:That's why I brought the movie theater.
Speaker 1:Yeah.
Speaker 2:That's more of a normal one.
Speaker 1:But also to remember when we went to Disneyland in the dark, the dark spaces or the loudness.
Speaker 1:He had his headphones on a lot then. So, anyways, with that is very common to also have a speech delay. So I think I completely forgot about that earlier. But I think because of that is another reason why we're so hesitant to slap on that autism label. And so I just felt like we, this is what we had to land on. And so you and I kept going back and forth, like, is this what it is? Is it just, is it the sensory issue? And everyone kept saying you know, when he's five, just wait till he's five, he's gonna grow into it, he's just gonna start talking one day.
Speaker 2:Yeah.
Speaker 1:Do you remember that? So I just felt like at this point we were just left with having to trust our parent. Gut.
Speaker 2:Yeah, we had nothing else to go off of, and I mean we had opinions that we didn't agree with. Because I feel like it's so weird nowadays, like you're, we're taught to like just not ask why or what about this or that doesn't make sense here, and it's like that's what we were doing at the time. We were questioning everything. Like you're saying my child is acting one way, but we can physically watch him, and that's not. He's not doing what you're saying.
Speaker 1:And I think, too, we had a lot of input from our friends and family who had been around. Jace and you know all of them are are trying. We're asking them questions like do you see this in him when, when he's with you, does he act this way? And they'll act, you know. Ask us big things like does he play with other kids? Yes, will he look you in the eye? Yes, does he like strangers?
Speaker 2:Absolutely like that was the biggest one for me. That, like from what I have known about autistic kids, is like being introduced to strangers or around kind of makes them uncomfortable, and we literally had to like prevent Jace from running out the door if, like the UPS man came up like it was any, but like the trash guy, he's running out like hey what's going on?
Speaker 1:Yeah, like he did not care and again, it's a very broad spectrum. So not all autistic kids have you know those issues. But we just felt like there was only the one box that he was checking when it came to that spectrum was the speech and and so, yeah, we were just, we were just, we weren't comfortable with the diagnosis and I want it. I want to reiterate that we don't have a problem. If our son was autistic, that would have been completely okay, we would have dealt with it and whether it been fine. But I didn't want to put this label on him because we're like, oh, I don't know what else will, be so sure, why not?
Speaker 1:yeah because it could potentially hold him back from things down the line, or as an adult, you know, like I don't, I would prefer him not going to the military. Just, you know, as a mom, but if that's something he wanted to do, that could affect him. So I just there's long-term effects here and we just we were really Trying to take those in consideration when moving forward with this and I just feel like this was a good reminder for us to trust our gut, to trust our parent instincts and, to, you know, do more research yeah, and Research on our own instead.
Speaker 2:Of.
Speaker 1:This is what the professional said right not just take everything at face value and be like oh well, the doctor said it, so it must be true. Yeah so, yeah, I think I think that was a very big turning point for us in in this speech-to-lay journey. Hey guys, thanks for joining us on this episode of life unmasked or as we journey through Jason's speech delay. We didn't realize we had so much to say, so we've decided to break this into two parts. Join us next week for the conclusion. See you then.