Tony Mantor: Why Not Me ? - Michelle Morton: Crafting Communication and Overcoming Sensory Challenges – A Journey of Autism Advocacy and Resilience

Episode Date: September 4, 2024

Send us a text What happens when your child's first words start to disappear? That's the heart-wrenching question Michelle Morton faced as her son's communication skills regressed and sensory challenges emerged. In this episode of "Why Not Me? The World," Michelle takes us through her powerful journey, highlighting a pivotal moment at Chuck E. Cheese that confirmed their suspicions of autism. Through her candid storytelling, Michelle shares how specialized therapies at High Hopes in Franklin, Tennessee, and the adoption of sign language helped her son make remarkable strides in communication. Navigating the complexities of raising an autistic child within an inclusive school system is no small feat. Michelle opens up about the crucial role a supportive educational environment has played in enhancing her son's social interactions and speech. Listeners will gain insight into the daily challenges of sensory sensitivities, feeding therapy, and family dynamics. Michelle's account vividly illustrates the triggers of meltdowns, the importance of self-regulation, and her son's ability to hyper-focus on certain interests, providing a nuanced picture of their experiences and milestones. Looking toward the future, Michelle reflects on the hopes and challenges that lie ahead over the next five years. She emphasizes the necessity of consistent therapy and the heartening progress her son has made, from developing a love for baseball to showing affection more freely. The episode concludes on a note of gratitude and inspiration, inviting listeners to share their own compelling stories. Tune in to celebrate resilience, progress, and the unwavering support that defines Michelle's journey with her son. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mayator. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to Why Not Me the World. Today's guest is Michelle Morton. She will discuss her journey of supporting her autistic son.

As a mother, she has learned valuable lessons that she's going to share with us today. So thanks for coming on. Yeah, absolutely. Thanks for having me. Oh, it's my pleasure. So I understand that you have a son that's autistic, correct? Yes. Okay, so how old is he now? He is going to be four in June.

Okay, so how old was he when he was diagnosed? Just a little over a year ago. What were some of the things that led you to believe that something was not quite right and that ultimately led you to get him diagnosed? He was hitting all his milestones and doing really well as a little guy, you know, And then all of a sudden, he kind of started regressing. He wasn't talking. He wasn't saying really anything.

He wasn't speaking at all. In fact, he was screaming when he needed something. Anything at all, he just screamed. So that was, you know, really frustrating because we couldn't communicate with him. Then we noticed other stimulatory type of behavior, like he would just get overstimulated. And I think what was the nail for me, not in the coffin, but, you know, the hammer hit the nail on the head was we went to Chuck E. Cheese for my grandson's birthday. And you know how overstimulating Chuckie Cheese can be just for a normal person. While we were there, it was pretty horrendous.

We had already at that point kind of sought out and been to the pediatrician and was lined up to be tested. When we went to Chucky Cheese, it was almost, we know he has autism because it was just, it was just absolutely horrible when we went. We actually had to leave. We were probably there 15 minutes and we had to leave. So it was sensory things where loudness and just all that got to him. Yes, just all the noise and the, you know, there's video games and there's people everywhere and, you know, it's just madness as it is. Right. When we were there with him, he was just, he could not control himself.

Yeah, that's really tough. So since you've got him diagnosed, has his verbal skills gotten better and his temperament got better so that overall you can see a step forward? Oh, yes, absolutely. We were very insistent on the best care and we're both in the healthcare field. So we kind of knew kind of which avenues to go. And we were really lucky to get in a place. called high hopes with him to be evaluated. And then we were lucky enough to continue on with them. And he's had therapy with them, OT, which is occupational therapy, and feeding therapy and speech therapy three times a week for the last year and about a couple of months maybe. And that's right here in Nashville, right? They are in Franklin. Yes, Franklin, Tennessee. Yes. Okay, Franklin. So how long was it before you started seeing some progress once they started working with him? I've heard so many different stories where some would just automatically start really grabbing a whole of it and others

would resist. So how was it for him? Did you see an impact fairly quickly? Almost immediately. Oh, wow. Good. Yes. I mean, after the first few sessions, we were already seen, we were already able to communicate with him some because they started implementing things such as, sign language and pointing to pictures and things like that. Like they were able to help assist us pretty quickly. There was one word that actually just kind of changed our lives. It wasn't a word. It was a sign and it was for more.

When he wanted more of a drink or he wanted more of something, him being able to sign more was kind of life-changing for us because all he could do was scream. He didn't know how to communicate. Now you say sign language is, Is that the standard sign language that you see out there? Or is it something specifically for autistic people? No, it's just normal S-A-S-L sign language.

And, you know, he started off using sign language, and now we don't need to use it anymore. Sometimes he'll still do more when he needs more and drink when he needs a drink. But that's just out of habit. He doesn't need to anymore because he can actually say those words now. Oh, that's great. So I know a lot of people started out with pictorial using iPads, etc.

Does that something you started out with? Or did you not have to do that? They wanted us too, but we refused. He was not frustrated with learning, which if he would have been really frustrated and regressed from it, then we would not have done that. But he was moving along really well, and we did not want him to rely on that. We wanted him to be pushed to speak, if that makes any sense. Oh, absolutely, sure.

Some children get more frustrated because they just can't speak, but he was doing so well phenomenally well that we felt like that wasn't for him. So we actually refused. Well, that's great that it worked because that's the beauty of being able to look at each individual autistic person because it's such a wide spectrum. So the bottom line of this whole scenario is that what you did worked, and because of that, he's in a better place for his future. Yes, absolutely. Now, if we had started seeing him regressing and getting so frustrated, we would have resisted as long as we could, but we just, we didn't want him to rely on iPad for communication. Sure. So how does he get along going out into situations now? You had that major meltdown a year or so ago.

at Chucky Cheese, has he developed and evolved better now so he can go into situations like that, or is that something you still try to avoid? We have a place that we go to that is not as bad as Chucky Cheese, but it can get very busy, and it's called We Rock the Spectrum. If you ever heard of that place? I have. We do things like that, but Chucky Cheese, no, we do not. We also have, we have five children all together, and so we have children that are in sports and things like that.

And one of us still stays home with him while the other one goes to the sporting event. Or if we're able to both go and get a babysitter, we do. But we don't bring him in those situations because we know how hard it is for him. Sure. You know, he can't sit at a basketball game and he can't sit at a, you know, at a ball game. He just, he can't. So it's better for him not just. to right now, but things are getting better. I even take him to the store once a week and walk around

with him. Like if I need to get two things at the store before we couldn't do that, I would take him and hold his hand and walk around the store and he would help me pick out the two items that we needed and then we walked to the checkout and he would help me check out and he helps me check out. So that's, things are better, but not to the point to where we're just all in yet, if that makes sense. Absolutely. So what are the ages of your other children? So we have a 33-year-old with three grandkids. Okay. And we have a 20-year-old, 19, 16, and Levi, who's almost four. Okay. So I'm assuming that out of the five, he's the only one this autistic? Been diagnosed with, yes, we have our suspicions. We do have our suspicions, but yes, he's the only one. one that's been diagnosed. Okay, so he's the only one that's diagnosed autistic out of five. How does he get

along with his brothers and sisters? And how is the interaction between them? Oh, yes, they're so, they're such good big brothers and sisters. They really are. They, they will do anything. They help all the time. You know, they help us all the time. They play with him. They take him outside to play. They play games with him. Yes, they're wonderful. That's just so good to hear because the one thing you hear sometimes is the parents just don't have a good support system. Right. Right. Yeah, he has some amazing brothers and sisters that jump in and help all the time. They really do. That's just so awesome. So what's the school system look like for him now? Is he going to preschool, private school? What's his placement there?

Yes, he goes to preschool two days a week in Fairview. And so that's like all day, pretty much like from like nine to three. And so he does that twice a week along with, of course, we do therapy. We're there in Franklin for four therapy sessions per week. And then he's home with me. So how does he handle the two days in preschool that are fairly long? He loves it. Oh, good.

Yeah. Some days are harder than others. I think one of our biggest challenges, and I never, I'm a nurse, but I don't think I realized that with autism, how difficult transitions can be. Transitions, meaning when you drop a child off and when you pick a child up. So going from preschool to me and from me to preschool, it can be very difficult. The transition from me to them and then back to me is often difficult. and still is, which we work on that all the time in therapy. They know that's probably one of our biggest difficulties right now that we have.

Now, the school that he's going to, is that a special needs school? Or is it a school that blends in neurotypical and autistic along with special needs? It's all inclusive. There's some of all. Good, good. Yeah. So that's really good that you've got a good school system because of all the people I speak with, That is their top agenda is getting a good school system because most systems aren't prepared for it.

They don't have enough people to take care of special needs and neurotypical. So that's really good that you've got a good system like that. Yes, yes. He's got a good group of little friends that he just is one little boy that he really has really kind of gravitated towards. And I know sometimes that can be difficult with autism and he's done really well. Yes, that is really, really good. So what about textures? I know some have problems with textures of food, textures of clothing. Does any of that bother him? Yes, we're in feeding therapy every week, so his palate is a lot better than it was because of that. As a general rule, he likes crunchy textures as far as food goes. Most everything he wants is crunchy. And then with clothes, he's done fairly.

well. He doesn't like tags. Like if there's a tag in his shirt, that's his one biggest thing. And for most everything else, he's done pretty well. Not quite as terrible is some situations. That's really, really good. So what are some of the things that you see that he might be excelling in now that a year ago you didn't think was possible? He's talking. Oh, good. The fact that he's talking, he's actually saying sentences now. And it's quite tear-jerking. It's times because if I watch videos because I was I had a YouTube channel that I just haven't kept up. But if I watched those videos of him a year ago, it's just he's just a different child altogether. He's not frustrated.

He can communicate. You know, we were driving down the road just a few minutes ago and he saw a dump truck and he was like, Mom, dump truck. That was just something that he, we didn't know that he would ever be able to do that, to be honest. You mentioned that it affected him when you dropped him off and then of course when you picked him up. Now, you've got a large family. So how does it affect him with the interactions of everybody coming and going and living their own lives? How does that all fit in so that he can adjust to the different timings of everybody moving around in just normal life? It's difficult at times,

you know, when one person's coming in, like if his Bubba, we call him his Bubba, if his Bubba comes home from college, he gets really overstimulated sometimes when Bubba comes home, because number one, they play hard. They, you know, they tickle and they run and they chase. And so he, sometimes the transition when Bubba comes home is a little rough on both of them because he's so stimulated. They're so overstimulated because he's so excited. And then when Bubba leaves, he gets, you know, it gets a little bit sad. But, you know, the transition of coming and going with the other.

others is just as difficult. Yeah, and it's ongoing. That's an ongoing issue, yeah. Okay, so now what about meltdowns? You mentioned that he had that issue at Chuck Echee's, but now time has progressed. Things have changed. You've had him in therapies and a lot of different things. Does he still have meltdowns? Is it a daily thing or once in a while? How's he doing on that now? It's not near as often. He still has them some. There are a lot. There are a lots of still difficult situations that come about. Mostly in the afternoon when things, afternoons are his hardest times. And if he's going to have a meltdown, it's usually in the afternoon. It's not typically in the morning. I think it's just because his body's just kind of worn out.

But not near as often do meltdowns happen as they used to. And that's because he's able to, I believe, with autism, they have to learn how to get regulated, regulate their body. body and if he is not regulated, then he will have a meltdown pretty quickly. What about focused and attention? I've heard from several different people that when their son or daughter gets focused on something, they just will not give up until they've learned everything they possibly can and they just keep on going until they feel like they've attained all the information they possibly can. Is he like that at all? Yeah, he does. He sure does. He, you know, if he's, you know, if he's,

He wants something and we're saying, no, he can't have it. That will be a fight for hours. Like if he is focused on, I'll just say we took a toy away as robot truck. He loves a robot truck. If we took that robot truck away because he was misbehaving, he will focus on that robot truck for hours. Yeah. So, or if there's something that he wants to play with, he can focus on that for a very long time. Okay, so have you seen where he might focus on something that he really like, but yet he's got some things that he doesn't like? Or is he open to looking at several different things so that way he can have opportunities to choose from all that?

He's willing to try a lot of different things. I was just thinking about that the other day. He really loves trucks and things like that. More recently, like a little dollhouse thingy and a Barbie that went with it. We bought this big pink. It's not a bus. It's like a camper. It's all pink.

And then he bought a, and we got a pirate ship. So, like, he's not doubly focused on, like, he will only play with trucks. Or he will only do this. He really has an expansive. mind, I think. That's really good. So he's young. So this question may or may not apply.

Some autistic people, as they age, get older, become so literal that they have a very difficult time understanding what a person is saying to them, whether it may not be a joke or lighthearted, or if it's really serious. Do you see anything in that from him yet? Yeah. Yeah, where he doesn't see the emotion or feel the emotion. Yes, there's just small things that happen where he'll be, he just doesn't think about the other person's feelings or emotions.

Yes, yes. So when he's talking with people, this is a great thing about kids, autistic or neurotypical. The things that comes out of kids' mouths, you just never know what they are going to say. They're very honest. So do you see him having those characteristics and whatever he thinks? he just says. Oh, yeah. Oh, yeah, absolutely.

And he's still little, and I don't know that that will ever change because, like you said, some people with autism are just very literal and they can't break down, not can't, but they don't sometimes break down the fact that they might hurt somebody's feelings if they say something, even if they say it a certain way, it may just be that they say it. And it may be something that me or you would never say. But yeah, there are some instances, and I can't think of the exact examples, but yes, he's still little. Right. We work on feelings and things like that a lot with therapy.

So he is starting to learn things like, you know, mama's sad. If I, like, you know, look down and I try to look like I'm sad, you know, we try to work on those emotions. So that's hopeful. We're hopeful that he might do a little better than he's now when he gets older, but we'll see. What are some of the things you see that they're doing in therapy that might give him a better coping mechanism so that it will help him grow and excel and give him opportunities to really develop and be able to do pretty much everything that you kind of hope that he would do? I sometimes will watch, especially with occupational therapy, with OT. At first, they're just building rapport and relationship and then they start working on like their peer-to-peer relationships. so they will team up with another therapist and another child if they see that that child, those children will play well together. And so there have been a couple of situations where sharing,

just plainly sharing is a huge thing for children with autism sometimes. Wow, that sounds really good. He was crying while he was having to share, but I never thought that he would actually willingly take turns like he took turns this one time I was watching. Pretty phenomenal. And that is all after both children are regulated because they work on that regulation before they start working on like real hard things. So it's about getting regulated first. So I've learned, you know, he's got, he has to get regulated. First thing, when he starts his day, he has to get regulated. Got to do whatever it is that, you know, heavy lifting, jumping, you know, whatever it is that has to be,

done, we work on regulation so that he can work on the harder things. And we also do, just to roll this over, we always do occupational therapy. If anybody out there has a child with autism that goes to therapy. And if they don't do occupational therapy before they do their other types of therapies, and I would request to change that. Because occupational therapy will get them regulated, their bodies regulated, before they have to go in and do that hard stuff like speech therapy and feeding therapy and those other therapies that are more intricate and more difficult for them because they have to sit or they have to, you know, work on things. And so if their bodies regulated, then they're able to work on those things a whole lot more. And that's the one thing we have learned

with occupational therapy. Okay. So now you went through the first couple of years. Everything seemed to be going okay, and then all of a sudden, boom, like you said, the hammer hit the nail and you knew something was not right. So you find out he's autistic. Now, you know how it's affected him, and you've talked about that, but now let's turn this around a little bit. How did you feel and how did it affect you moving forward? You know, for a moment, I think I think I had a moment where I was sad. I don't know. I don't think I had time to really realize what was happening to me. But I do think I had a moment of where I was just sad because I know that it can be very difficult for anyone who has autism, no matter where they are on the spectrum, there's going to be more challenges

as if there's not enough challenges in the world. And so I think that I had a moment where I was sad. Then I pulled on my boots and I said, well, this is what we got to do. We got to get him the help that he needs. And I quit my job and I had to because there's no way to get him to therapy and everything he needs to get to. So I quit my job and poured everything into him. That's great. I think that was the right decision for you. So how did your husband take it? Because usually there's a difference between the mother and the father in the way that they may approach it. Well, so I have to correct you because I know that you probably don't know this, but I'm married to a woman. Oh, okay. So I guess the correct question would be how did it affect her? Yeah, so she gave birth to him. She gave birth to him. And so, you know, as far as how it affected her, she may have even been a little more sad than me. Okay, that's understandable, I guess. So how is she doing now? We've gone through the therapies, you're doing all these things. And he's growing.

evolving, you're seeing the odd changes. Is she in a better frame of mind now after all this? Yeah, yeah. And she's a nurse practitioner, so she's even more, as far as being in the medical field, she's even more, was even more knowledgeable than me about a lot of things with autism. So she was able to navigate and actually, actually was the one that got that appointment with high hopes, which has, by the way, been the savior for our son. If anybody I just plugged in for high hopes. They are amazing. They are making, they are why the reason why our son is doing so well today. Oh, that's, that's really good. Yeah. So I mean, she, she immediately started channeling her thoughts into what, what do we need to do next? That's really good. That's a great way to look at it, a great way to

go about it. It just brings everybody together. So well done. So my next question is, what do you see for them in the next five years? Do you seem completely? adapting and being able to grow into what you had for original hopes for him. What's the five-year window look like? I do think so. I think that we will do everything in our power because that's, that's just kind of the people the way we are. Every week, we drive an hour to where he goes, just to get him to high hopes. So we'll do everything in our power for him to be as successful as he possibly can be. And I do believe, I do believe that he will be, he will be able to do all the things that he wants to do and hopefully more. Yeah, yeah, absolutely. We all want what's best for our kids. Yes.

And when we have challenges sent to us, we have to find a way around it, work on it, and hopefully let them evolve to doing what they want to be doing. Right, right. One thing that comes to mind that we never, ever thought that he would ever be able to do, he has learned. to love playing baseball. And we've been playing it in the backyard a little bit. And he just absolutely loves it. Nice. And I'm hopeful, my fingers across and hopeful that we can maybe get him into a little league of some kind. And that would be phenomenal. That would be really phenomenal. Yeah, that would be just simply awesome. I don't know how he'll do, but I hope he's able to play one day because he seems to love it so much. Yeah. And the biggest thing is,

is the more he grows, the more he understands things, the more of the therapy helps him, that's going to help that transition so hopefully that he can do that. Yeah, absolutely. So that's one thing that I have hopes for is that he'll be able to be involved in things like that, sports, you know, where there are other kids, where you have to do certain things. Right, right. And I know it can be difficult, but I think he can do it. I hope he can. Yeah, me too. That would be just so great. So is there anything, that we've missed that you would like to just put out there? Goodness, I can't.

You've really asked all the good questions. He's just doing, you know, with therapy and everything, he's just doing phenomenal. You may have seen this on a T-shirt. I don't know if you have or not, but it's true. Regulation before expectations are always, always first. They cannot focus. They cannot move along in their day and do it. it well without being regulated first. Children, autism have to be regulated. That's a very good thing to know.

So now, you're standing in front of a group of people. They just found out they've got an autistic child. They're just learning about autism. They know a little bit about it, but not a whole lot. What are you telling them? Oh, boy. It's not that it's not difficult, but you just learn a new way of life. You learn to navigate in a different way. The way that you saw, your child's life going or your life going is you're going down a different path. You're not going down the path that maybe you saw for yourself or you saw for your child. It's just a different pathway to get to, if it's a child, for them to be the most successful human, because that's ultimately what you're trying to do if it's your child is to teach them, to get them to this point in life where they can

take care of themselves and they can be successful. So it might just be a different path and not the path that you thought. But it's definitely doable and seek support because you'll definitely need that support. And therapy is a must. Yeah. You know, a question just popped in my mind that I don't think I asked. A lot of autistic people, they have a issue with touch. They don't like to be touched. They don't like to be hug. They don't like to hug. Did he have any of those issues at A year ago, he would not even sit in our laps. But now he is a huge cuddler. He wants to sit on the couch with us.

Okay. And I'm telling you, I mean, things have just changed so much in a little over a year that it's absolutely insane to look back on and think about. But he would not even sit in our laps and snuggle or he wouldn't lay down with us. The snuggle, like, lay on the couch with us. Right. But yes, absolutely. that was was a huge thing.

And we have had a huge turn of events in the last like three to six months with that in particular. And as a parent, that has to be just really a very horrible feeling that your kid won't show any affection towards you. Yes. Yes, it was so difficult. Sometimes it's difficult because you just want that connection and them even just look in you in the eyes. You know, sometimes they won't even look at you in the eyes. He absolutely does that now. But he wasn't doing that a little over a year ago. So, yes, that connection, the touch, the love, the hugging,

that he didn't want to do any of that. Now, was that with everybody? Yes. So even his brothers and sisters were affected. Now, we still did, you know, and I mean, we, and not that we forced him, but, you know, we did, you know, pick him up, hug him, kiss him. We did all those things, but he just was not open to them like he is now. Yeah.

Yeah. Well, that's a big positive change. I think one thing that also, you had asked me if we had missed anything, one thing that was also really difficult a year ago was bathing. A lot of autistic children getting wet, cold is all these sensory things in the bathtub. If anybody out there is having that kind of trouble with therapy, that can and will get better. most times does get better, but a little over a year ago, it was almost impossible to get him in the bathtub and bathe him. We dreaded trying to bathe him. But now he loves them. But he used to

scream all the way through his baths. Yes, I have heard that from several different people. Even as they age, sometimes if their clothes get wet, they better have another change real soon because they just can't tolerate it. They just cannot stand it. It has to do with sensory stimulation. Just, it's just bathing was just one of the awfulest things. And I, and I didn't want to leave that out or forget it, because with therapy too, and I, in therapy, I don't exactly understand how therapy helps with that, but I think it just helps with you learn how to help them regulate their bodies. Yeah, it just comes down to whatever works and helps. Well, this has been a really great conversation. And I really appreciate you coming on.

Yeah, yeah, absolutely. Thank you. I appreciate you. It's been my pleasure. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymentor.com.

Contact. Then they can give us their information so we'll. One day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not me the world, the conversations we're having and the inspiration our guests give to everyone, everywhere, that you are not alone in this world.