#074: Autism Story with Amanda V. | From Non-verbal to Conversational & Straight A’s
One of the earliest red flags for Amanda was that Jaedan wouldn’t respond to his name. In fact, he wouldn’t respond to anything, and she worried that he was deaf. He also struggled with certain food textures and had a terrible gag reflex. Soon, Amanda was bouncing between the advice of the occupational therapist and the speech therapist.
Amanda shares the transitions that Jaedan went through and how that impacted him and her family.
ABA therapy is a science. But it’s also an art; and each situation is different. Kids like Amanda’s son need more than an hour here and there with a therapist. They need a comprehensive program to reach their full potential. For twenty hours a week, someone was able to work with Jaedan until he transitioned into public school.
Today he doesn’t even have an IEP, and he plays on the school football team. Early intervention changed his life. I hope this autism story provided some hope and insight into what’s possible with applied behavior analysis.
Our guest for this episode is Amanda V. and she’s a mother of two kids – one of which is a boy with autism. She reached out to me when her son, Jaden, was diagnosed with autism when he was three years old. Amanda and I worked together to help Jaden through an ABA program.
- Amanda shares her son’s journey into speech from the single word “cup” to complete conversations.
- A lot of the things that Amanda worried about aren’t even in the picture anymore. Her advice to other parents is: Don’t sweat the small stuff.
- I think that no matter how it turns out, it’s always good to have hopes about the future.
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Transcript for Podcast Episode: 074
Autism Story with Amanda V. | From Non-verbal to Conversational & Straight A's
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast. I'm your host, Dr. Mary Barbera. And today, I have an interview with a mom of two kids. And her name is Mandy Vacarro and I am interviewing her after she reached out back in the fall and she sent me a picture and the following message and I'm just going to read it. Sometimes I give a listener shout out. But today, I'm going to give a shout out to tell you what Mandy said on this message I got in the fall. She said, I'm not sure if you remember us, but we are the family whom you had helped several years ago. Eight, to be exact. Our son Jaden was non-verbal, had self-injurious behaviors. And then you came and showed me how to use ABA.
Mary: Fast forward to today, Jaden's first day of middle school. He's a straight-A student football player and is the most caring child ever. He cracks jokes all the time and his smile is contagious. Thank you from the bottom of my heart for being such a strong foundation for my son and giving me the tools I needed to connect to him and have a positive impact in his life. So that is such a nice message. As you could tell from this message, I worked with Jaden and Mandy with her son. I almost forgot about them. I have been in touch with her for years. So she reached out. So I thought I would love to interview her. How did she help her son get from completely not talking and self-injurious all the way up to 11 years old? Sixth grader who is doing great. So this is that interview. I hope you enjoyed it.
Mary: So I'm so excited for Mandy. Thanks so much for joining us today, Mandy. So I'd like to start out all my interviews the same way. Describe your fall into the autism world.
Mandy: It was scary. It was unknown and it was scary. Unexpected, definitely unexpected. My son was very young and I know was something that I struggled with early on, was wondering if he was just developing slowly like all boys I was told do, or if there actually was something going on with him that I wasn't fully addressing as a parent. So that was scary.
Mary: And what year was this or how old was he when you first started to see signs?
Mandy: I actually noticed when he was around 9 months old. I actually noticed he was struggling to do certain things, wouldn't sit himself up. I had to kind of prop him. And in the beginning, he was newborn. He started cooing and looking at me and there was like some, you know, eye to eye contact. And then I remember very distinctly around 9 months. He stopped, if I would I say his name. He stopped responding. I would stand there and clap and say, Jaden no head turning, no nothing. It was like I didn't even exist. I remember my mom watching him one day and she would say to me, did he have a hearing tests? Because I think he's deaf. That was hard, him losing that.
Mary: Were you thinking autism right away or were you? Did you have any idea about autism?
Mandy: I didn't know anything about autism at that point. I honestly thought he was deaf. I thought he was either losing hearing or deaf. I mean, I would stand next to him and I would clap loudly and I would say Jaden, Jaden. And it was just, you know. If there is an object in front of him, he'd be this close and he'd just be mesmerized by it. Not even hear me at all.
Mary: So did he have it? Did he have a hearing test?
Mandy: He had a test and the hearing test was normal. He was perfectly, perfectly normal. Perfect hearing. A little stinker. What's going on?
Mary: Yeah. The lack of reaction to sound and to calling your name is really one of the earliest red flags. I know for Lucas. We also thought maybe he had a hearing problem. But the other thing is that we would say Lucas, Lucas, we would clap. We would do all the things you're describing. But then we would, you know, the Jeopardy song would come on or the lottery and he'd come tearing around the corner. So some sounds he would respond to. And so that should have been our first clue that it actually wasn't a hearing loss. But we did also get a hearing test. But that is actually a sign that I don't think any other podcast guest has talked about how big of a sign that that is. And OK. So. So you started having concerns around nine months. You got a hearing test at some point. At what point did you call in early intervention to try to evaluate him or try to start services?
Mandy: I remember sitting down with his pediatrician for just the follow up, and I don't remember if it was his. I feel like it was his one-year checkup and. His doctor held out a pen to him and he said and he just held it in front of him and he was saying his name. It wasn't until I had my second child that I really like what you do, that I know it sounds awful, but when I had my second child, she grabbed everything.
Mandy: Anything you put in front of her even before nine months. She wanted to be in on everything you were doing. You set the table. It's in her hand, you know. I remember chasing around, trying to keep everything away from her. And he's holding this pen saying, Jaden. Jaden could've cared less. He was turned looking at the pictures on the wall and anything but his voice, his face or the pen. And he wanted him to pick it up and to grab it and hold it. I don't know if couldn't or wouldn't. But it didn't happen. And that's when he stopped and said, I really think you would benefit from early intervention, because I think he just needs a little push. And they didn't say autism at that point. It was just, You might be just really delayed mentally. He had suggested reaching out to one.
Mary: So what kind of early intervention did you get? And most people in the United States do qualify for either free or very low-cost evaluations and treatment within your home for a child under three. So it sounds like you contacted your birth to three, an agency. And well, I kind of know the story because I was actually one of those early intervention providers, because you do live fairly local. So. But before I started, which aided, what other kind of professionals came to your home?
Mandy: We had a speech. There was a speech therapist. There was an occupational therapist. The occupational therapist. Well, that one was hard for Jaden. She really helped me with the eating problems. You get a lot of eating problems and I remember feeding him was really difficult. She would kind of massage his face muscles when he would try to chew things. Like textures were a big issue for him. You would put something in his mouth and he'd just kind of stick out his tongue, like oh he didn't like how it felt.
Mandy: He had a horrible gag reflex. He would gag and throw up all the time. And so she would just keep trying to help me with the food problems. And I mean, he definitely wasn't lacking in food. There were certain things he liked, and that's all he ate. But trying new foods, you know, experimented with different textures. She really helped with that. And then the speech therapist, she's the one that had mentioned to me because that's where we had noticed them. I think the regression with him. And she said, you know. It's not really my place to say this, but I think you'd be better off kind of whipping more of a direction towards like the autism angle. And that's literally the first time I'd ever heard of autism.
Mandy: I didn't know what it was at that point. I was like. OK. What is autism? I did some research. And really, that was just all it was me just researching him and talking his dad. Maybe we should do this. You know, and he was in denial about it in the beginning because he's like, you know, you got to give it time to let them let more with you. Let's take it day by day. I remember him really pushing me in that area and a lot of frustration because I was at home all the time. And I'm like, you're not you're at home dealing with this. And, you know, you go to work.
Mandy: But those two people were probably, that was the beginning of the road. And honestly, you know, they would say these are some goals that we want for Jaden. And then I would see him not meeting them. And then that's when I was like, OK, something's not right. I'm not getting. I mean, I really do need to pursue that road because I'm not getting he's not getting his needs like meeting these goals. What am I doing wrong?
Mary: Right. Right. So it sounds like, you know, and in my situation, I was the one in denial when my husband first mentioned the possibility of autism. But I got a lot of false reassurance because, you know, my husband mentioned it. Then if I would bring it up to someone and they're like, oh, yeah, like the doctor or the pediatrician or the speech pathologist. And they would kind of be like, oh, you know. And so everybody was like dancing around the issue. But when I started to look into autism was when I realized that his symptoms were there. Actually my best performing video blog. Oh, close to half a million views. Is it autism or speech delay? We can post that in the show notes for this podcast. But there are very similar symptoms. And, you know, if you have a speech delay, then you've got feeding issues and sensory issues and problem behaviors and lack of awareness and lack of turning around when your name's called then lack of pointing then that is probably is more indicative of autism.
Mary: But your situation really does have a very happy. It's not an ending, but, you know. And we're going to talk about how Jaden is doing now, which is remarkably well. And you know we're gonna get into that in just a minute. In fact, right before we hit record, you said, you know, Jaden knows that you're doing this podcast interview. He wants to listen. So he's only twelve years old now. OK, so he's eleven years old. OK. So before we get to, you know, kind of how he's doing and your hopes for the future and your advice to get kids, let's kind of go back. OK. He was. So at what point did I get involved with coming to your home?
Mandy: I had researched, you know, where to find, you know, a doctor. Where do I find a doctor that can just have a sit down and tell me what's going on with my son. And the wait list was incredibly long. It was like. I mean, at least a year when I was looking and that was, you know, back when he was not even three. So I literally just, you know, searched the quickest place I could get in there, had someone sit down and it was for you close by. I mean, closer than Philly for me. But I didn't want to go to Philly. I'm going to be honest with you. You know, so I said, I am not taking him to Philly. So and that was the other thing, too.
Mandy: I had to think about his dad's work schedule at the time. A lot of his therapy fell on me and I didn't know... This is something I'm gonna have to do on my own. Not, am I comfortable doing it, but can I do it? I have a small child too, you know with him. Something I would have to picture myself doing. So I had contacted their office and I don't remember if I needed like a referral from his pediatrician or not. I'm pretty sure we just you know, I said I have some concerns. He has some early intervention therapists working with him now. They had kind of encouraged me to reach out and kind of research autism a little bit. And I was wondering if I could set an appointment and they got us in. We saw Dr. Tierney and that first visit was really hard. He definitely had his true colors. And, you know, it seemed like everything that she asked him to do. I sat there. I was like, oh, that's gonna be so bad. You know, he just shined through, you know, thehigh pitched screaming, the head banging, you know, slamming things, you know, going and running. And I mean, it was, you know, he and his dad and I just sat there like, this is it.
Mandy: This is how he is. And then. He had another doctor there with her and they left the room and they came back and I will never forget her sitting there with all her notes. And she said, Mom and dad. Have you ever heard of autism? And as soon as she said that. It wasn't even I'm here because I want a diagnosis. It was just I'm here because I want you to tell me what's going on with my son. And when she asked that question, I just I knew. Like, yep this is it. He has it. I don't even honestly remember anything after her asking that. I know she talked about autism. She said he definitely has autism. You're going to have to come back. There's you know, this is a long road ahead. And I just kind of clocked out a little bit because I'm sitting there just thinking about.
Mandy: What this is going to mean? It was hard to sit with and that ride home after that was really. It was hard. I just had to, even now thinking about it like. It meant that everything was going to be different forever. It didn't mean it, wasn't a death sentence, but it just meant that. You know, it is different and it is going to be different. And I just had to sit with that for that car ride. And get used to it. And then by the time I got home. I said, OK.
Mandy: He's different. Now what do I do? And I remember getting on the phone that day and calling early intervention and saying, I have an autism diagnosis. Now what? And they said, OK, now we can get the help he needs because you have that diagnosis. And they just needed the paperwork from the doctor and all that. But it was like as soon as we had the diagnosis, the doors opened. It was no more.
Mandy: You know. Just this wasn't mindless, but it was just these routines. No, I know we're not getting anywhere, but we're going to keep doing this. But it was like as soon as we had that golden ticket, it was like, OK, now you want more resources. Now we can help you. And then that's when they had said, you know, we're going to send a different therapist to your home. And it was shortly after that I got a phone call. And it was, hi. You know, we have this this book that we got here, notice with a few of our clients, it's been working. Would you be interested in reading it? We know the author. She just joined us. We could have her come out to your homes. She only has a few clients right now. And I thought I was like, yep, yep. Bring her over. Bring her over. Yeah, I want the book. Let me read the book. So. Yeah.
Mary: Because I had just started with early intervention birth to three with a contract in 2010 when I left the verbal behavior project. So Jaden was one of my first, you know, handful or two of clients back then. And I do remember coming and you know. And then when I went into other people's homes, sometimes I would go and they've already had other early intervention providers in their homes. Sometimes I went just straight from the start. And I kind of went and took the place of one hour of speech, one OT and one hour of teacher and went for three-hour chunks to some people's houses. And sometimes, like in your case, I would go in and I would supplement and work with the speech therapist. It was already on site. The OT that was already on site. And what I found is that like Jaden in a lot of kids with autism, but also those with signs of autism when they're young, you know that some of the very traditional things that early intervention professionals try actually don't work or don't work well. And then you get problem behaviors.
Mary: And meanwhile, you know, you might get problem behaviors for sleep or whatever. And so a mom is usually the one that's home almost in all cases. But sometimes I've had the dad home. But, you know, the mom is pulling her hair out because the kid's not sleeping. And then she has the OT and the OT's like, oh, well, you know, he needs his pacifier soothing or he needs his blanket or whatever. And then his speech therapist will say, no, no, no pacifier. That's not good for his talking and his articulation. And really, it's just like neither of those are right or wrong. It's just that each child needs an individualized plan and a lot of parent training. And so. Yeah.
Mary: So I came in and at that point, Jaden had self-injurious behavior, screaming. I'm not sure if he was talking at all. Not talking at all. Shaking your head. No. Yeah. So he didn't have any language. But I think we we pretty quickly use of the techniques that I now teach in my online courses to get him talking and get his tantrums down and get him. You know, I don't know if I helped at all with feeding, but I do now have expertise in feeding and sleeping and all the issues that come along. But when the doctor diagnosed Jaden and you were doing your reading, did you did you have hope for recovery or hope that Jayden could be included and potentially go to college and get married? And it was it was that a big thing for you?
Mandy: I think in the back of my mind, that was the hope. But. Thinking back, you know how I was feeling. I felt a little hopeless. It wasn't until I started seeing progress that I knew, OK, it's going to be a long road to get there, but we're going to get there. And that gave me hope. And I remember. Honestly, I remember the first time that you came with him, you pulled into the driveway and you walked up, you had a bag on your arm and you had wooden puzzles in your bag. I will never forget this. And honestly, I think that day I cried, like, this is gonna work. And he's gonna get, we're gonna get this. You sat down on the sidewalk with me. I was just sitting on the step and I was losing my mind and you said, hi, I'm Mary. And you were introducing yourself to me and we came. Jaden came over and sees my attention was not on him for one second and that was not OK. And you? It was like you. It didn't even phase you.
Mandy: This child's like tantrumming right next to me. And he goes to take his head and hit it on the pavement. And you put your hands right where his head was gonna go. And still keeping eye contact with me, not even paying attention to him, but just slid the hand in there real quick. And then looked at me and just nodded and kept going on with the conversation. And I was like, I'm just freezing for a second and thinking, this is gonna work. And then the puzzles you know, he wanted that puzzle that you had in your bag and you kept closing your bag because he kept trying to grab, you know, the bag. And you looked at him and you said, I'm talking to your mother. First, your mom. And then puzzles, you know, and you pulled the bag close to you. And, oh, he screamed and carried on. And then you said, OK. No puzzles, and you just held the bag close to you. And we kept talking. And then he's trying to get attention and it's not going anywhere. He's ended up stopping. I'm like, where have you been? Why haven't you been here sooner? I remember that day definitely feeling hope because. You know, these were techniques that I hadn't really tried that much before, but it definitely worked for him and it got through to him. And I was still able to have a conversation with you.
Mary: Yeah, I'd like I told you, I have a not a very good memory for things, but I don't remember that. And part of what I was doing there, you know, thinking back or hearing the story as I was assessing like what he was going to do if I said no and what he said. So I was I was in full blown assessment mode. Plus, I was also trying to get your way where he was, what he was doing, you know. Was he able to talk and all that? So I was doing assessment. Well, good thing I didn't let him hit his head on the cement because that is not a good thing. So, you know, we're talking you know, ten years ago is when I came in. And I have to say that, you know, even my procedures, which I which Jaden you were part of, the families that helped me create my step by step system for toddlers and preschoolers especially was my systems have has even evolved further to be like as child friendly, less crying like I do not like crying at all.
Mary: And, you know, just hearing the story like I'm thinking probably in hindsight, like just hearing that bit of a story, I probably would have moved inside to prevent the cement hitting. You know, I probably would've, you know, moved into a nicer. You know, I don't I don't like if he were grabbing at my bag now, I probably like, you know, get it out and see if I could engage him because he has high motivation. But, you know, for each child, it's moment by moment decisions. And being a behavior analyst since 2003 and working with hundreds, if not thousands of kids directly. It is a science. But it's also an art and there's a dance to it. And each situation is so different so that if or if it brings back nice memories that you have. You know that I gave you hope that things could turn around because they definitely did. And then I was able to get to services like people, you know, really do.
Mary: Kids like Jaden really do need not just a little bit of it. So a little bit of that one hour here, whatever they are, they need a comprehensive program in order to reach their fullest potential and that the best outcome. So we work together. And most of my families, we got like 20 hours of therapy a week paid for by your insurance. You know what time the systems so that families didn't go bankrupt in terms of providing 20 hours of care. I also got you with a company that had another behavior analyst because I was being paid by the birth to three agency. And so when kids turned 3, then the payment structure changes, which is another stress that I don't think we've ever even talked about on this podcast. But that's stressful. You get a diagnosis and then you have to switch systems and suddenly comes not at home. But at the center. Taking less time away from parent training and the 24/7 kind of struggles that's really top. Let's talk about his transition. Not just a three to five agency, but really to school. Like at what point did he start talking? Did he start playing? Did you have a glimmer of hope that he was going to catch up in any way?
Mandy: I think it was during his third year that he started talking. I want to say, during his third year, I remember there was kind of a crunch because we wanted to get him into some type of educational program to kind of encourage the interaction with other kids, but also the talking. I remember him lining up juices and the counter and he'd kind of giggle like, you know, because there would be cups, but he wouldn't say cup. The cups would just be all in the line.
Mary: So how did he get from saying cup at the age of three, let's say, to being conversational and end like it was just a process that just take time. Lots of therapy.
Mandy: There was a lot of therapy. I remember the behavior analyst that was working with us. You know, she would say don't say, you know, don't do the baby language with him. Don't say dad, dad, mama and all that. You know, she said it's, you know, daddy, mommy cup instead of like my bar bottle or whatever it was. You know, she said, just talk to him. You know, even though he's not saying things. Back to you. Here's what you're saying. And when he starts speaking, he will say, you know what, you're what you're pouring into him. And so I remember even just sitting and reading books at night with him. I would read the same books over and over. And there would be no he wouldn't try to sound out words I would point towards and say words. And she'd say, don't give up, keep doing it. The more you do it, just keep doing it. It will happen. And.
Mandy: I remember he just you know, he just picked up with it and we celebrated every word and then putting words together and even the one night sitting down and I'll never forget one of the books I read to him. He loved the Clifford books and he would sit there and when he picked up language, he took off with it. When he finally spoke, he took off with it. And he had this Clifford book in his lap. And he had that book memorized like word for word. He wouldn't even have the page turned and he'd be reading the next page. And I remember recording him doing this and like, oh, he has it memorized. Just the repetition. But, you know, he would talk about this big red dog and he would sniff after every page because he had these weird little, you know, quirks. But, oh, it's so adorable that he really took off. Like once he actually started speaking. It was it was pretty much just like she had said, you know, he's just gonna take off. He's got it in his brain just when it happens. Don't worry, it will happen.
Mary: Yeah, that's great. And now he's. And what grade?
Mandy: He's in sixth grade.
Mary: And he does not have an IEP anymore.
Mandy: He's mainstream now. He's, you know, the school and reached out to us and said, you know, we don't really think that he needs these services anymore. And it's only because he's not using them, like they're available to him. You know, everything that he needs is available to him per his plan. And they said he hasn't used it in this long. And it was probably before he even went to middle school. And they had said, you know. If he's not using them, I mean, we're here for him. But there's no reason why he can't just be with everybody else. And I remember being so nervous about that like you know I talked to his dad about it, his dad's like, I'm all for it. Let's go. Let's do it. You know, no problems. Great. No. IEP. Great. Let's do it. No looking back. And I was just like, oh, I don't know. Is he ready? Is he gonna be okay? And he's like, is he gonna be OK? You know, look at him. He's gonna be fine.
Mary: And so he is. You had the way this whole interview got schedule was back in the fall. You had reached out to me and you told me you reminded me that I worked with your son back in like 2010, and that you told me that he's straight-A, student, football player and very caring child. So does he still have a lot of a lot of autism issues?
Mandy: I still see it as his parent. I think. The biggest thing now is more the social piece. And that's hard and he doesn't talk about that like he doesn't talk about social interactions really with school and he demeanors then situations at school that have happened where you vaguely talk about something doesn't give a lot of detail. But it seems like his approach is very standoffish and it doesn't bother him one bit being that way. Not full on interacting. He's totally fine. Not real, I want to say socializing, but he doesn't really. He's there, but he's not fully involved. He's doing what everyone is doing. But he's not really.
Mandy: Creating bonds, I guess you could say it's more my perspective. The sports have been really, really good for him, especially football. He loves football. They always say, you know, autistic kids have their thing. I would say football is definitely his thing. He knows all about the sport, all about players and stats and, you know, college football. Professional football, you name it. That's his thing. And seeing him on the field is it's really good for him because. He's had to learn and it hasn't always been easy, but he's had to learn how to be a team player and. It's definitely tricky with someone with autism. I think my biggest frustration has been how the other kids are with him. There's a lot of people know he has autism or he's different. Which frustrates me. But. Sometimes they don't know how to treat him, if that makes sense.
Mary: And that well, there's a lot of playing it, a lot of cliques and all kinds of things, even if all the kids are typical. It's still kind of a really tough situation to navigate socially, even if you're socially very competent. So I can imagine if you've got, you know, some social differences. It makes it even tougher. So Jaden knows he has autism. How did that did? Was that a conversation or was that just like he always knew or.
Mandy: I'm pretty sure I had a conversation with him. I didn't make a big deal about it and I didn't want to make a big deal about it. It was I'm pretty sure it was. There was an interaction with him and a group of kids. And he has this tendency to make like little songs about people. He does these little sing-song things or they'll make nicknames for people.
Mandy: And I remember having to have a conversation with him. You know what's appropriate? What's not appropriate, you know, in your mind. This is something that's funny. This is something that this is how you associate with this person. But in their mind, this is what they're thinking. And so maybe you could do that in your room, know when nobody's around, you can do these songs or you could maybe even journal. You know, the same song or keep it at home. And then when you're out with them, just use their name. And I had to explain to him, like the difference between him and these other kids.
Mandy: And he did it early. You don't take it bad at all. He just kind of shrug like he wasn't it wasn't something that he wasn't life changing for him. Shortly after that, though, he did say something really funny. There was a fly flying around the house and it kept landing on his face. He got really upset and he swatted at it and he goes, Mom.That fly has autism. What? It's just keeps at me. Very. Wow. That's deep. That's quite the perspective there. The fly has autism. It just, you know, when something you know, or even like an object, if an object just keeps falling over or keeps frustrating him or something, he'd say he would say it has autism. You know, he just got very frustrated. It has autism. OK.
Mandy: They did talk to him about it. His school, too. I'm pretty sure it just recently, even too, when they had, you know, put him into just the mainstream. Yeah, I was kind of curious what they had told him. You know, what did they say to you? When they had explained it. And he said what they had told him was just that sometimes there are cases where some kids need more resources than others to get the job done. And he doesn't need those resources anymore. He's figured out how to do it. OK. That's interesting.
Mary: One way to put it. OK. So one of the things that we talked about before hitting record is that you got a divorce from Jaden's father. And when you were separated, he was about kindergarten. So I'm just wondering how that if that affected the situation with Jaden, then his progress or how is that now to go between homes and that sort of thing?
Mandy: The biggest thing for Jaden was the separation. Leaving dad and coming to mom or leaving mom and going to dad. That was hard for him. So I think kind of letting him know, like, you know, tomorrow you're going to be with Dad, OK? And just doing the mental preparation for him. Letting him know like dad is going to meet us here. That's where we're going to go. Then you're going to go be with your dad. And then dad will bring him back.
Mandy: And it was just getting him back in that routine. Having the same schedule. This is what's going to happen. That's what happens. Really helped them as far as like the separation piece. It was hard for me as a mom, though, because seeing him struggle, it was like, is this worth it? I could just let him stay there. And it's not even push to have this change in routine or whatever, but. It got better. Time help with that. And he got used to the routines. It's really hard co-parenting sometimes, especially with an autistic child. And when he was younger, it was really difficult because. It was hard to keep things the same in two different places. And establishing routines was hard. But once we got through that just repetition. Helping him know, like this is what you're going to notice is what's going to happen. This is what we do. First this, then that, and following through a bit and then seeing that really helped curb a lot of that. There was tantrumming. There was. I wouldn't say it was a lot of late regression, but. He definitely was testing the waters.
Mary: Yeah, well, it's hard to have, you know, even two parents who are living together and married to be on the same page. And then you have, you know, the different styles, the different parenting styles, a different you know, you got a lot more training, I'm sure, on therapeutic intervention than he did just because you were home. And then now you have the two physical locations, like you said, to try to keep them stable for him. I'm sure that that presented challenges, but it sounds like you've figured that out long along the way as well, which is great. So what are some pieces of advice that you would give to your younger self for you would give to your best friend going through, you know, an autism diagnosis or signs of autism? Like what? What advice? Just a couple of things that you would kind of say.
Mandy: You think looking back on things that I would give myself is. Not to sweat the small stuff. A lot of the stuff that I really got worried about is not even part of the picture anymore. I think focusing on. The big picture things, the goals, having hope. And just staying focused on that would really alleviate a lot of stress. I mean, if I could go back and redo it, that's what I definitely would do. It was not so much, you know. Oh, my goodness, my child, when he's with kids his age, he's not doing the things that the other child is doing. Who cares? You know, who cares? Focus on the big picture of things, you know, can he talk? Can he? You know, because when he first started talking, then it was. But he's not doing it fast enough now. It was this comparison thing. I had to really just get over it. If I could go back, I wouldn't even I wouldn't even bother with it. I would just take the advice of the professionals, follow. They know what they're talking about. They do. It works.
Mandy: Take it step by step, day by day. But don't ignore your gut feelings, too, I know that reassurance. And you're talking about maybe you're not a lot of that. And I think it's OK to say no. Oh, OK. You know, I hear what you're saying. You know, always a boy who develops slowly. OK. OK. Yep. I hear that. But at the end of the day, this is my son, and I know that something's not right and I'm going to fight for that. Being his advocate, and has said from day one, I was his voice when he didn't have one. I was his advocate. I always will be. No matter what happens, no matter, you know through the divorce, through whatever milestones we had with him, you know, as he ages, he's hitting pubertynow. Bullying in school and the sports. And what are his goals and him talking about driving in the future and things like that.
Mandy: Just. Listen to your gut. Goday by day. Really? And listen to your child. You know, even if you're not speaking, they're telling you something.
Mary: Yeah. What are your hopes for? And are you. Are you envisioning that he is going to drive and go to college and do those things? Are you hopeful?
Mandy: Honestly, I had to learn a lot from his dad, too. I know it sounds crazy, but. His dad, I feel like in the beginning had denial about things and then there was acceptance. It was OK. He has autism. Let's do this. Let's fix it. And I had a lot of frustration with that when I was younger because I thought this is not an easy fix. You can't just fix this. It takes time and you have to learn how to work with it and then kind of mold it where you want it to go. And you have hopes and dreams that you can't really put a whole lot of weight into that because you don't know if it's really going to happen.
Mandy: But she kind of held so steadfastly, you know, this is going to happen. And. You can just. I feel like he had these hopes and dreams. He's gonna go to school. He's not gonna have an idea. He's gonna play sports is it's going to get good grades. It's going to happen. And it is happening. You know, in the back of his mind, he knows. It essentially couldn't have, but we're kind of celebrating these victories, and so I had to learn to really push for just mainstream and. These votes, it is going to happen and we're going to press for it. If it doesn't, that's OK. And push for it. And not making a big deal about it to even just get sarcastic. OK. So she's very smart. He just started playing rugby. Not that long ago before the Corona virus canceled everything. It's a full contact sport and it's like never thought he would be doing something like that like where people are actually that close to him and he's totally fine with it. Just hugging this big old ball being told, yeah this is how you play a sport and following instructions and doing it.
Mary:Following the rules and being on teams and also being flexible to navigate all the changes, I think it sounds like he's doing incredibly well. And I'm so happy that I was a small part of your journey to kind of help you turn things around. I really do appreciate you contacting me and letting me know that, because I think you can provide a lot of hope to parents of young children, which, you know, you don't know how it's going to turn out. And even for my son Luke, it's like he's at a different point. He's twenty three. He's never going to be able to play. Never played sports. Never going to drive. Never gonna get married. But that also doesn't mean that he can have a happy life. And I can't have a happy life. So I really think that no matter how it turns out, it's always good to have goals. And when you know, when he's 2, you can't say, oh, I hope he drives in and you know, you don't know how it's going to turn out.
Mary:But, you know, I think setting or even setting hopes, not even setting goals because, you know, you have no idea if he's going to drive or maybe he's going to not want to drive or be too anxious to drive more. Maybe he's going to have to wait a couple of years. I know. I just had Suzy and Kelly Carpenter on the podcast a few weeks ago, which we can link in the show notes and Kelly as it's twenty-three with autism. And she learned to drive and she's dating. And we talked about bullying and those sorts of things. So that's gonna be a good episode for you to listen to as well. But she waited a couple years extra to learn to drive. And a lot of times, especially boys sometimes need the extra couple of years for maturity and decision making and those sorts of things. But, you know, there's a will. There's a way.
Mary:And if it doesn't mean that everybody is going to get there? But I think, you know, he's included now without an IEP. Playing football, why shouldn't you hope for things to continue to go well? So I'm really pleased to hear that. OK. So let's wrap up. I'd like to end with talking about ways you can reduce stress and live a happy life. Part of my podcast goals is for parents and professionals listening to be less stressed. Do you have any self-care tips or any ways you reduce your stress?
Mandy:At the end of the day, I definitely, sometimes with my kids, sometimes it's not. But I just need that time to just exhale. Just sit quietly and think about. The day listen to music, I know some days some things are not easy with Jaden even now doing so well. Getting him involved in things helps alleviate a lot of that stress. But sometimes at the end of the day, I think one of my favorite things is when he comes out and it's a beautiful deck and we just talk. And that's something I never thought would happen. This journey. I'm just having a conversation. I think that is a big reward for me. And I think that's also one way that has really helped me in this journey. Thus the small rewards, you know, at the end of the day, where it was like this was a really tough day and I need this little peace. So just encourage me and it's gonna be OK. Things are going to be okay. Those little glimpses of like him as a person. It doesn't happen all the time. But that quiet time, even if it's by itself just taking time to this kind of decompress and put it away for the day and just separate.
Mary:And really think about like what you should be grateful for. I think just, you know, that quiet time at the end of the day and also like what went well, not just all the issues and all the problems, but what went well. And you sound like you're, you know, really in a good space being grateful for the progress that Jane has made and you've made along the way as well. And definitely the autism diagnosis does change your life for sure, even if it ends up with a pretty good outcome. And, you know, the end is never here, you know.
Mary:So like my goal is for each child to reach his or her fullest potential and to be as safe, as independent and as happy as possible. And I have the same goals for both Lucas and Spencer, who's, you know, graduated from college and going to med school next year. And so it's the same thing. I know you have a typical typically developing daughter as well. And it's the same thing. We want all our kids and ourselves to be safe, independent and happy. And so it's a constant journey and it's never over with or without autism. So I really appreciate your time and being here. Mandy, you've given us great insights. Hopefully you've given a lot of people hope that just keep at it, put one foot in front of the other and live your life and try to try to move forward. I really appreciate you reaching out to me to let me know how great Jayden is doing. And I'll continue to hopefully keep in touch with you and continue to wish you both well.
If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop. You can learn how to avoid common mistakes. You can see videos of me working with kids, with them without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.
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